BloodStream: Recent Episodes
BloodStream Media
BloodStream is an entertaining and informational podcast for the bleeding disorders community. Each week, hemophilia patient Patrick James Lynch and former non-profit director Amy Board are joined by advocacy leaders, medical experts, and other guests to discuss the latest news, scientific advancements, policy initiatives, and so much more. Subscribe wherever you listen, or search BloodStream Podcast on YouTube to catch every episode there. Produced by Believe Limited. Presenting sponsor: Takeda.
Please see https://www.pfi.sr/HYMPAVZI_PI for Full PI
#HYMPAVZISponsored Mosi Williams, PsyD, lives with hemophilia and has served in
the Bleeding Disorders Community for the past 30 years. He is currently a Licensed
Clinical Social Worker for the UCSF Adult Hemophilia Treatment Center.
Mosi joins Patrick to explore the evolving treatment landscape and the anxiety that
critical moments that shape life with hemophilia—like going back to school, starting a
new job, or planning a wedding—can bring, and how they can prompt deeper
consideration of a treatment change. We'll provide listeners with the latest on HYMPAVZI (marstacimab-hncq) and highlight the value of shared decision-making.
HYMPAVZI may cause serious side effects, including blood clots (thromboembolic
events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your
arm, leg, lung, or head, which can be life-threatening. To learn more about this risk and
additional safety information visit www.HYMPAVZI.com.
This post is directed to a U.S. audience and may not be suitable outside of the U.S. This
video is intended to be viewed as it was originally produced in partnership with Pfizer.
Remember, this content is for educational purposes only and does not replace
discussions with a healthcare provider.
PP-HYM-USA-1290
Show Notes:
For safety information
visit: https://labeling.pfizer.com/ShowLabeling.aspx?id=20916&Section=PPI
For information on how to navigate your treatment journey, visit the Shared Decision-
making Guide: https://webfiles.pfizer.com/HYM-Shared-Decision
Listen and Subscribe where you get your podcasts! #Hemophilia
IMPORTANT SAFETY INFORMATION Important: Before you start using HYMPAVZI, it is very important to talk to your healthcare provider about using factor VIII and factor IX products or "bypassing agents" (products that help blood clot but work in a different way than HYMPAVZI).
Your healthcare provider may prescribe factor VIII or factor IX medicines or bypassing agents to treat episodes of breakthrough bleeding during your treatment with HYMPAVZI. Carefully follow your healthcare provider's instructions regarding when to use these medicines and the prescribed dose during your treatment with HYMPAVZI. Do not use additional doses of HYMPAVZI to treat breakthrough bleeds.
Before using HYMPAVZI, tell your healthcare provider about all of your medical conditions, including if you: * have a planned surgery. Your healthcare provider may stop treatment with HYMPAVZI before your surgery. Talk to your healthcare provider about when to stop using HYMPAVZI and when to start it again if you have a planned surgery. * have a severe short-term (acute) illness such as an infection or injury. * have been told that you have a risk for blood clots. * are pregnant or plan to become pregnant. HYMPAVZI may harm your unborn baby.
Females who are able to become pregnant: * Your healthcare provider will do a pregnancy test before you start your treatment with HYMPAVZI. * Use effective birth control (contraception) during treatment with HYMPAVZI and for at least 2 months after the last dose of HYMPAVZI. * Tell your healthcare provider right away if you become pregnant or think that you may be pregnant during treatment with HYMPAVZI. * are breastfeeding or plan to breastfeed. It is not known if HYMPAVZI passes into your breast milk.
Tell your healthcare provider about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, and herbal supplements.
If you inject too much HYMPAVZI, call your healthcare provider or the Poison Help Line at 1-800-222-1222 or go to the nearest hospital emergency room right away.
What are the possible side effects of HYMPAVZI? HYMPAVZI may cause serious side effects, including: * blood clots (thromboembolic events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. Blood clots have happened in people using HYMPAVZI. You may have an increased risk of blood clots if you have certain risk factors. Stop using HYMPAVZI and get medical help right away if you develop any of these signs or symptoms of blood clots: * swelling or pain in your arms or legs * redness or discoloration in your arms or legs * shortness of breath * pain in chest or upper back * fast heart rate * cough up blood * feeling faint * headache * numbness in your face * eye pain or swelling * trouble seeing * allergic reactions. HYMPAVZI may cause allergic reactions, including rash and itching. Stop using HYMPAVZI and get medical help right away if you develop any of the following symptoms of a severe allergic reaction:
- swelling of your face, lips, mouth, or tongue
- trouble breathing
- wheezing
- dizziness or fainting
- fast heartbeat or pounding in your chest
- sweating
The most common side effects of HYMPAVZI include: * swelling, hardening, redness, bruising, bleeding, and pain at injection site * headache * fever * joint pain * diarrhea * itching * rash
These are not all the possible side effects of HYMPAVZI. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.
What is HYMPAVZI? HYMPAVZI is a prescription medicine used regularly to prevent or reduce the frequency of bleeding episodes in adults and children 6 years of age and older with:
- hemophilia A with or without factor VIII inhibitors, or
- hemophilia B with or without factor IX inhibitors.
It is not known if HYMPAVZI is safe and effective in people receiving ongoing Immune Tolerance Induction (ITI).
It is not known if HYMPAVZI is safe and effective in children younger than 6 years of age.
Could new research change the way hemophilia B carriers are cared for during pregnancy?
On this episode of BloodStream, Patrick and Amy explore emerging research that challenges long-held assumptions about factor IX levels during pregnancy and what it could mean for patients and providers. Nathan Mermilliod shares his experience living with hemophilia B, and Dr. Steven Fein discusses the evolving landscape of telemedicine in partnership with Zebra for Care. From new discoveries to lived experiences, this episode highlights the stories and science moving the bleeding disorders community forward.
Show Notes:
Contrary to current guidance, antenatal factor IX levels increase in female carriers of hemophilia B
Hope for Hemophilia
Zebra Care
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Subscribe:
The BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on X/Twitter
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Please see https://www.pfi.sr/HYMPAVZI_PI for Full PI
On this episode of BloodStream, Patrick facilitates a conversation between Peter, who is living with hemophilia A, and Dr. Tammuella Chrisentery-Singleton, a board-certified hematologist and Chief Science Officer (CSO) for The American Thrombosis and Hemostasis Network (ATHN), to explore the shared decision-making process and why it matters. We'll provide listeners with the latest on HYMPAVZI (marstacimab-hncq) and highlight the value of shared decision-making.
HYMPAVZI may cause serious side effects, including blood clots (thromboembolic events).
HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. To learn more about this risk and additional safety information visit HYMPAVZI.com.
This post is directed to a U.S. audience and may not be suitable outside of the U.S. This video is intended to be viewed as it was originally produced in partnership with Pfizer. Remember, this content is for educational purposes only and does not replace discussions with a healthcare provider.
PP-HYM-USA-1115
Show Notes:
For safety information visit: https://labeling.pfizer.com/ShowLabeling.aspx?id=20916&Section=PPI
For information on how to navigate your treatment journey, visit the Shared Decision-making Guide here.
Listen and subscribe where you get your podcasts! #Hemophilia
IMPORTANT SAFETY INFORMATION Important: Before you start using HYMPAVZI, it is very important to talk to your healthcare provider about using factor VIII and factor IX products or "bypassing agents" (products that help blood clot but work in a different way than HYMPAVZI).
Your healthcare provider may prescribe factor VIII or factor IX medicines or bypassing agents to treat episodes of breakthrough bleeding during your treatment with HYMPAVZI. Carefully follow your healthcare provider's instructions regarding when to use these medicines and the prescribed dose during your treatment with HYMPAVZI. Do not use additional doses of HYMPAVZI to treat breakthrough bleeds.
Before using HYMPAVZI, tell your healthcare provider about all of your medical conditions, including if you: * have a planned surgery. Your healthcare provider may stop treatment with HYMPAVZI before your surgery. Talk to your healthcare provider about when to stop using HYMPAVZI and when to start it again if you have a planned surgery. * have a severe short-term (acute) illness such as an infection or injury. * have been told that you have a risk for blood clots. * are pregnant or plan to become pregnant. HYMPAVZI may harm your unborn baby.
Females who are able to become pregnant: * Your healthcare provider will do a pregnancy test before you start your treatment with HYMPAVZI. * Use effective birth control (contraception) during treatment with HYMPAVZI and for at least 2 months after the last dose of HYMPAVZI. * Tell your healthcare provider right away if you become pregnant or think that you may be pregnant during treatment with HYMPAVZI. * are breastfeeding or plan to breastfeed. It is not known if HYMPAVZI passes into your breast milk.
Tell your healthcare provider about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, and herbal supplements.
If you inject too much HYMPAVZI, call your healthcare provider or the Poison Help Line at 1-800-222-1222 or go to the nearest hospital emergency room right away.
What are the possible side effects of HYMPAVZI? HYMPAVZI may cause serious side effects, including: * blood clots (thromboembolic events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. Blood clots have happened in people using HYMPAVZI. You may have an increased risk of blood clots if you have certain risk factors. Stop using HYMPAVZI and get medical help right away if you develop any of these signs or symptoms of blood clots: * swelling or pain in your arms or legs * redness or discoloration in your arms or legs * shortness of breath * pain in chest or upper back * fast heart rate * cough up blood * feeling faint * headache * numbness in your face * eye pain or swelling * trouble seeing * allergic reactions. HYMPAVZI may cause allergic reactions, including rash and itching. Stop using HYMPAVZI and get medical help right away if you develop any of the following symptoms of a severe allergic reaction: * swelling of your face, lips, mouth, or tongue * trouble breathing * wheezing * dizziness or fainting * fast heartbeat or pounding in your chest * sweating
The most common side effects of HYMPAVZI include: * swelling, hardening, redness, bruising, bleeding, and pain at injection site * headache * fever * joint pain * diarrhea * itching * rash
These are not all the possible side effects of HYMPAVZI. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.
What is HYMPAVZI? HYMPAVZI is a prescription medicine used regularly to prevent or reduce the frequency of bleeding episodes in adults and children 6 years of age and older with:
- hemophilia A with or without factor VIII inhibitors, or
- hemophilia B with or without factor IX inhibitors.
It is not known if HYMPAVZI is safe and effective in people receiving ongoing Immune Tolerance Induction (ITI).
It is not known if HYMPAVZI is safe and effective in children younger than 6 years of age.
On the latest episode of BloodStream, Patrick sits down with Cassie Miller, a parent raising two daughters with von Willebrand disease. Together, they talk about staying solution-focused, trusting your instincts, and advocating when the path forward isn't clear.
Jeff and Barb return to the podcast with therapist Gary McClain for a thoughtful conversation about the emotional side of living with a rare disease, exploring resilience, difficult emotions, and how we support ourselves and one another.
Show Notes: LevelsMatter.com
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I'm Fine is presented by @SanofiUS
Subscribe:
The BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on X/Twitter
BloodStream on Instagram
BloodStream on LinkedIn
BloodStream on TikTok
Please see https://www.pfi.sr/HYMPAVZI_PI for Full PI.
#HYMPAVZISponsored William S. Somers, Ph.D., was a biotherapeutics research and development leader with more than 30 years of experience across biotechnology and pharmaceutical organizations, including Pfizer.
As a scientist living with hemophilia, Dr. Somers played a key role in driving the patient-centric and purposeful design of HYMPAVZI (marstacimab-hncq). This episode will explore how the patient perspective influenced the scientific journey, with a special focus on Will's research and why it was personally important for him to bring HYMPAVZI to people with hemophilia.
HYMPAVZI may cause serious side effects, including blood clots (thromboembolic events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. To learn more about this risk and additional safety information visit HYMPAVZI.com.
This post is directed to a U.S. audience and may not be suitable outside of the U.S. This video is intended to be viewed as it was originally produced in partnership with Pfizer. Remember, this content is for educational purposes only and does not replace discussions with a healthcare provider.
PP-HYM-USA-1267
Show Notes:
For safety information visit: https://labeling.pfizer.com/ShowLabeling.aspx?id=20916&Section=PPI
For information on how to navigate your treatment journey, visit the Shared Decision-making Guide here.
Listen and subscribe where you get your podcasts! #Hemophilia
IMPORTANT SAFETY INFORMATION Important: Before you start using HYMPAVZI, it is very important to talk to your healthcare provider about using factor VIII and factor IX products or "bypassing agents" (products that help blood clot but work in a different way than HYMPAVZI).
Your healthcare provider may prescribe factor VIII or factor IX medicines or bypassing agents to treat episodes of breakthrough bleeding during your treatment with HYMPAVZI. Carefully follow your healthcare provider's instructions regarding when to use these medicines and the prescribed dose during your treatment with HYMPAVZI. Do not use additional doses of HYMPAVZI to treat breakthrough bleeds.
Before using HYMPAVZI, tell your healthcare provider about all of your medical conditions, including if you: * have a planned surgery. Your healthcare provider may stop treatment with HYMPAVZI before your surgery. Talk to your healthcare provider about when to stop using HYMPAVZI and when to start it again if you have a planned surgery. * have a severe short-term (acute) illness such as an infection or injury. * have been told that you have a risk for blood clots. * are pregnant or plan to become pregnant. HYMPAVZI may harm your unborn baby.
Females who are able to become pregnant: * Your healthcare provider will do a pregnancy test before you start your treatment with HYMPAVZI. * Use effective birth control (contraception) during treatment with HYMPAVZI and for at least 2 months after the last dose of HYMPAVZI. * Tell your healthcare provider right away if you become pregnant or think that you may be pregnant during treatment with HYMPAVZI. * are breastfeeding or plan to breastfeed. It is not known if HYMPAVZI passes into your breast milk.
Tell your healthcare provider about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, and herbal supplements.
If you inject too much HYMPAVZI, call your healthcare provider or the Poison Help Line at 1-800-222-1222 or go to the nearest hospital emergency room right away.
What are the possible side effects of HYMPAVZI? HYMPAVZI may cause serious side effects, including: * blood clots (thromboembolic events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. Blood clots have happened in people using HYMPAVZI. You may have an increased risk of blood clots if you have certain risk factors. Stop using HYMPAVZI and get medical help right away if you develop any of these signs or symptoms of blood clots: * swelling or pain in your arms or legs * redness or discoloration in your arms or legs * shortness of breath * pain in chest or upper back * fast heart rate * cough up blood * feeling faint * headache * numbness in your face * eye pain or swelling * trouble seeing
- allergic reactions. HYMPAVZI may cause allergic reactions, including rash and itching. Stop using HYMPAVZI and get medical help right away if you develop any of the following symptoms of a severe allergic reaction:
- swelling of your face, lips, mouth, or tongue
- trouble breathing
- wheezing
- dizziness or fainting
- fast heartbeat or pounding in your chest
- sweating
The most common side effects of HYMPAVZI include: * swelling, hardening, redness, bruising, bleeding, and pain at injection site * headache * fever * joint pain * diarrhea * itching * rash
These are not all the possible side effects of HYMPAVZI. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.
What is HYMPAVZI? HYMPAVZI is a prescription medicine used regularly to prevent or reduce the frequency of bleeding episodes in adults and children 6 years of age and older with:
- hemophilia A with or without factor VIII inhibitors, or
- hemophilia B with or without factor IX inhibitors.
It is not known if HYMPAVZI is safe and effective in people receiving ongoing Immune Tolerance Induction (ITI).
It is not known if HYMPAVZI is safe and effective in children younger than 6 years of age.
On the latest episode of BloodStream, Patrick and Amy introduce The Flow podcast rebrand, preview our upcoming Hemophilia B series with Zebra for Care, and share the latest hot tips for sending your kids to camp.
Listen now and subscribe to BloodStream wherever you get your podcasts so you do not miss what is coming next.
Show Notes: Project Elevate Her
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Subscribe:
The BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on X/Twitter
BloodStream on Instagram
BloodStream on LinkedIn
BloodStream on TikTok
The FED UP Act is headed to Congress and could reshape how women and girls with bleeding disorders are diagnosed, treated, and supported!
On the latest episode of BloodStream, Amy and Patrick sit down with Joe Stanco, HTC Family Nurse Practitioner and founder of the Hemostasis and Thrombosis Nursing Association, for a candid conversation about today's hemophilia care landscape and where it is headed next. We also unpack what this bipartisan legislation could mean for access, research, education, and equity in care.
In this week's I'm Fine segment, we explore the emotional weight of caregiving, the pressure to always show up for others, and what happens when your own care starts to fall to the bottom of the list.
Advocacy, science, and lived experience all in one place. Listen now and subscribe to BloodStream Podcast wherever you get your shows.
Show Notes: FED UP Act
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I'm Fine is presented by @SanofiUS
#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy
Subscribe:
The BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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What does it look like to raise awareness from the top of the world?
On the latest episode of BloodStream, Maia Meier joins our beloved hosts, Patrick and Amy, to talk about her mission to climb the Seven Summits through Project Elevate Her and bring visibility to women and girls living with bleeding disorders.
From high-altitude expeditions to the everyday realities of advocacy, the conversation explores what it means to take up space in places where women with bleeding disorders have too often gone unseen.
Listen now and subscribe to BloodStream Podcast wherever you get your shows.
Show Notes: Project Elevate Her
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Subscribe:
The BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on X/Twitter
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On the latest episode of BloodStream, we look at what is really underneath the words "I'm fine" and who it is serving to keep things that way.
In I'm Fine, a family story across generations with bleeding disorders traces what has changed, what has not, and how honesty can begin to break cycles of silence that have long been passed down. What emerges is a closer look at resilience, inheritance, and the stories we are taught to minimize.
We close out our plasma donation mini-series with donor Carver, highlighting the people behind every donation and the quiet consistency that keeps treatment possible.
Plasma, perspective, and the moments where silence finally gives way to something more honest. Listen now and subscribe to BloodStream Podcast wherever you get your shows.
Show Notes: Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I'm Fine is presented by @SanofiUS
Subscribe:
The BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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On this episode of BloodStream—our plasma donation series continues with a powerful second installment featuring donor Hannah and the story behind what it really means to give.
We've also got a packed lineup: a look at momentum building at the WFH World Congress, policy progress led by State Senator Joseph Addabbo supporting families with rare disorders, and new momentum in storytelling as Sanofi backs additional documentaries spotlighting rare blood conditions.
Plus, we dig into the bigger picture—how bleeding disorders impact entire families, the role creativity plays when navigating physical limitations, and the isolation that can come with not knowing someone who shares your experience.
And don't miss a spotlight on The Red Ink Project and their virtual screening of Dismissed, a film bringing long-overdue visibility to women and girls with bleeding disorders.
All that and more—this is BloodStream.
Show Notes: NY State Senator Joseph Addabbo steps up for bleeding disorders
Sanofi backs 2 more documentary films about rare blood disorders
theredinkproject.org
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Subscribe:
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Connect with BloodStream Media:
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CSL Behring just announced a global "stockout" of Hemgenix—what's happening, and what does it mean for patients? On this episode of BloodStream Podcast, we break down the news, launch our mini-series on plasma donation, and hear from Thomas Savage in our I'm Fine segment, sharing the highs, the lows, and the reality of living with a severe bleeding disorder.
Pain, perseverance, and the lessons learned along the way give a rare, unfiltered glimpse into life behind the headlines—reminding us all that every treatment, every donation, and every day matters.
Show Notes: I'm Fine is presented by @SanofiUS
#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Subscribe:
The BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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In this special partnered episode of the BloodStream Podcast, hosts Patrick James Lynch and Amy Board speak with hematologist Dr. Tami Singleton about hemophilia A and B with inhibitors, a complex condition that changes how bleeding episodes are treated. Dr. Singleton explains what inhibitors are, why they develop, and how they impact clotting and everyday life for patients and families. The conversation also explores SEVENFACT, a recombinant factor VIIa bypassing agent, including how it works and what patients should know about dosing and treatment planning.
Click here to learn more about SEVENFACT.
This year marks 100 years since von Willebrand disease (vWD) was first described, and on this episode of BloodStream we take a closer look at how far the field has come.
Our beloved hosts, Patrick and Amy happily welcome Dr. Nathan Connell, hematologist and leading expert in bleeding disorders, for a conversation about the past, present, and future of vWD. Together they explore how our understanding of the condition has evolved since its discovery, the challenges that remain in diagnosis and care, and why awareness still matters for the millions of people worldwide living with vWD.
From early clinical observations to modern treatment approaches, Dr. Connell reflects on the milestones that have shaped care over the last century—and what the next hundred years could hold.
Plus, a preview of what's coming next on BloodStream as we approach World Hemophilia Day.
Show Notes: Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Subscribe:
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Connect with BloodStream Media:
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Bleeding disorders aren't just medical conditions — they're lived experiences shaped by resilience, community, and support. On this episode of BloodStream Podcast, Patrick James Lynch sits down with the WFH working group to explore why psychosocial care matters just as much as medicine and how human connections help people thrive.
Rocky Williams joins to share the power of positivity and what it truly means to be more than "fine," inspiring the bleeding disorders community to dream bigger, aim higher, and embrace life fully. We also break down a major shift in gene therapy: BioMarin's decision to pull Roctavian from the market, what it means for patients, and why preserving critical clinical data is essential for ongoing research and safety.
Tune in for a conversation that blends science, mindset, and community — because living with bleeding disorders is about more than treatments, it's about life itself.
Show Notes: BioMarin pulls hemophilia gene therapy Roctavian
WFH Gene Therapy Registry
LevelsMatter.com
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I'm Fine is presented by @SanofiUS
#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy
Subscribe:
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Connect with BloodStream Media:
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On this episode of BloodStream, we're thrilled to sit down with Connie Montgomery alongside Jeff and Barb for a warm, wide-ranging conversation grounded in lived experience and deep community roots. Together, they reflect on the moments that shape advocacy, the evolution of the bleeding disorders space, and the power of staying connected to one another.
Plus, a nod to Rare Disease Day, a bit of BloodStream banter, and a preview of what's ahead.
Tune in, share with your community, and as always—take self-care of yourself.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Subscribe:
The BloodStream Podcast
Connect with BloodStream Media:
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On this episode of BloodStream, we get a sneak peek at the 2026 World Congress with Dr. Glenn Pierce, Vice President, Medical at the World Federation of Hemophilia. What conversations are shaping the agenda? Where is the science heading? And how does a global convening like World Congress moves the needle on access, equity, and innovation for people living with bleeding disorders? Dr. Pierce shares why this gathering still matters — and what the community should be watching as 2026 approaches.
Plus, in I'm Fine, we sit down with Anthony, a performer and educator living with a bleeding disorder. From invisible disability to grieving the life you imagined, it's a candid conversation about ambition, identity, and learning to stop blaming yourself for what you can't control.
Global outlook. Personal reckoning. Classic BloodStream.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I'm Fine is presented by @SanofiUS
Subscribe:
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Connect with BloodStream Media:
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BloodStream on Facebook
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ASH 2025 brought a wave of new data — and on this episode, we're digging into what stood out.
Patrick and Amy welcome Dr. Akshat Jain to talk through the research, the momentum in hematology, and the conversations coming out of this year's meeting. What's generating excitement? What feels meaningful? And what could shape care moving forward for the bleeding disorders community?
If ASH sets the tone for the year ahead, this is your chance to hear how it's sounding.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Subscribe:
The BloodStream Podcast
Connect with BloodStream Media:
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Patrick and Amy sit down to hear her story—how she first got involved in the bleeding disorders community back in 2003, and how patient advocacy became her passion. Along the way, they share laughs about their unexpected pasts as actors and the moments that shaped their paths.
Also on this episode of BloodStream, our hosts also look back on the year in gene therapy, spotlighting patients, clinicians, and researchers who are redefining what's possible, including five-year insights from the HOPE-B study in hemophilia B.
This episode is a celebration of hope, trust, and progress—a reminder that hemophilia care isn't just about science, it's about people and the possibilities they create.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It's a Whole New World brought to you by @CSLBehring.
#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #genetherapy #healthcare #digitalhealth #biotech
Show Notes: Final Analysis of a Study of Etranacogene Dezaparvovec for Hemophilia B https://www.nejm.org/doi/full/10.1056/NEJMoa2514332
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On this episode of BloodStream, we look back at a year that reshaped the bleeding disorders community. Our Top Stories of 2025 segment explores the biggest shifts, from expanded treatment choices and growing complexity, to hard conversations about safety, trust, and the real-world limits of innovation. We examine gene therapy's reality-check moment, global progress through changes to the WHO Essential Medicines List, and why 2025 marked a turning point for women and girls with bleeding disorders.
Also featured, a powerful I'm Fine segment with Makenna Dietrich, who shares how "I'm fine" can hide anxiety and inaction, and why waiting has a cost. Her story is a reminder that speaking up and seeking support can bring clarity and change.
Together, these stories capture a year defined by honesty, courage, and a deeper understanding of what progress really asks of us.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I'm Fine is presented by @SanofiUS
#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy
Show Notes: Subscribe:
The BloodStream Podcast
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In this special year-end episode of the Bloodstream Podcast, Patrick and guest host Mark Pangilinan conclude their powerful three-part Blood Brother series featuring the voices and stories of men living with bleeding disorders across the country. Together, they explore themes of complicated grief, advocacy, identity, fatherhood, discrimination, and the emotional realities that often go unspoken within the community. Listeners will also hear the latest installment of the Gene Therapy: A Whole New World segment, where Dr. Margaret Ragni and Dr. Richard Lemons break down new long-term data, future technologies, and where gene therapy may be heading next. It's an honest, heartfelt, and hopeful finale that celebrates vulnerability, connection, and the collective strength of the bleeding disorders community.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Gene Therapy Segment
It's a Whole New World brought to you by @CSLBehring.
#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #genetherapy #healthcare #digitalhealth #biotech
Show Notes: To meet members of the community and to hear more about their hemophilia A journey, head
to www.hemophiliacommunity.com
Final Analysis of a Study of Etranacogene Dezaparvovec for Hemophilia B Subscribe:
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On this episode of BloodStream, Cheri Clark opens up about juggling life as a nurse, patient, caregiver, and board member, all while managing her own health. She shares the pressure of always saying "I'm fine," the moments she's pushed past her limits, and the lessons she's learning about setting boundaries that actually stick. We also hear from Nicole Angeles, reflecting on her second pregnancy with vWD—a very different experience than her first.
Together, their stories offer honest, grounded insights into balancing responsibilities, navigating health challenges, and finding your footing when life keeps shifting.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I'm Fine is presented by @SanofiUS
#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy
Show Notes: Rareblooddisorders.com
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This episode of the Bloodstream Podcast continues the Blood Brother Collaboration, featuring candid conversations among men living with bleeding disorders. Guests share personal stories of resilience, complicated grief, and the importance of community support. The discussion highlights the unique challenges faced across the lifespan, from childhood through aging, and emphasizes the value of open dialogue and mental health awareness. Listeners are encouraged to connect, share, and support one another through the Blood Brotherhood program and broader community resources.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes: To meet members of the community and to hear more about their hemophilia A journey, head
to www.hemophiliacommunity.com
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On this special episode of the Bloodstream Podcast, hosts Patrick James Lynch and Marc Pangilinan kick off a three-part Blood Brother Collaboration, featuring heartfelt stories and insights from men across the bleeding disorders community. The discussion centers on lived experiences, including complicated grief, joining the community, wearing multiple hats, and challenges across the lifespan. Listeners will hear candid conversations about overcoming obstacles, building support networks, and the evolution of treatment and community resources. Tune in for an inspiring and honest look at life with bleeding disorders, and discover valuable resources and support along the way.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
To meet members of the community and to hear more about their hemophilia A journey, head
to www.hemophiliacommunity.com
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In this episode of BloodStream, we look back at the history of gene therapy and highlight key voices from Portraits of Progress. We also share the story behind I'm Fine, featuring community advocate Benjamin Denman, recently honored at the Hope Gala. Plus, we introduce HFA's new Voice of the Community initiative and how you can get involved in shaping the future of bleeding disorders care and advocacy.
Tune in and join us in reflecting on where we've been, where we are, and where our community is heading next.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
"I'm Fine" Segment
I'm Fine is presented by @SanofiUS
#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy
Show Notes: Portraits of Progress: https://www.portraitsofprogress.com/
HFA Voice of Community: https://www.hemophiliafed.org/voice-of-the-community/
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This week on BloodStream, we're talking to changemakers. Elsa and Ann Kendall from The Red Ink Project share how they're shifting the story for women and girls in bleeding disorders. And advocate Lanre Tunji-Ajayi joins us to discuss building global networks for sickle cell and other inherited blood disorders. A conversation about voice, visibility, and what it takes to lead.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes: Red Ink Project
Global Action Network for Sickle Cell and Other Inherited Blood Disorders
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Art and science collide on this episode of BloodStream Podcast! Hosts Patrick James Lynch and Amy Board bring stories that inspire and inform the bleeding disorders community.
Patty Weltin and the Beyond the Diagnosis exhibit show how artists bring portraits of children with life-altering diseases to life. These works travel to hospitals, medical schools, galleries, and museums, raising awareness and sparking connection.
Hanna sits down with genetic counselor Kaylee Dollarshell to talk gene therapy—the science, the emotions, and the big decisions families face. A real, behind-the-scenes look at navigating this treatment.
Next time: Hear from Else and Ann Kendall of The Red Ink Project, sharing stories that will challenge how you think about patient advocacy.
Don't miss this episode packed with insight, inspiration, and real stories shaping the future of bleeding disorders care.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
Show Notes: https://www.beyondthediagnosis.org/
https://findageneticcounselor.nsgc.org/?reload=timezone
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We're live at BDC! Host Amy Board take you straight to the exhibit hall floor, chatting with doctors like Drs. Quon, Sidonio, and Radak, plus patient advocates Collin Johnson and Matt Capsel. From man-on-the-street interviews to a touching story from Greg, this episode reminds us all to run—not walk—towards science.
Join us for real conversations, patient perspectives, and insights on gene therapy, joint health, and life in the bleeding disorders community.
Next up: An inspiring interview with Patty Weltin and the "Beyond the Diagnosis" art exhibit.
Don't miss this insightful, energizing episode that dives into the future of bleeding disorders care.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
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On this episode of BloodStream, hosts Patrick James Lynch and Amy Board share stories of remarkable achievement and progress in bleeding disorders. Hear from Tim Stowers, a severe hemophilia A patient who has summited Everest and completed solo English Channel swims, as he shares his journey of resilience and determination. Plus, get the latest updates on Star Therapeutics’ lead VWD therapy, now entering a pivotal Phase 3 trial, and learn how patients can help shape the first validated VWD quality-of-life assessment tool.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes: Star’s Pivotal Phase 3 Study (VIVID-6) Initiated:
VGA039 is the first subcutaneous therapy, dosed once monthly, that has the potential to address all types of VWD and all types of bleeds. It has also received Fast Track and orphan drug designation from the United States Food and Drug Administration (FDA). The additional investment announced today supports our continued global clinical expansion as we advance into our pivotal, Phase 3 trial.
Explore clinical trial eligibility: visit THIS WEBSITE
To participate in the first validated VWD quality of life patient-reported outcome tool, please e-mail Judith.Monickaraj@chet.rochester.edu to learn more.
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On this episode of BloodStream, we explore the World Health Organization’s updates to the Essential Medicines List and what they mean for bleeding disorders care. Hemophilia B mom and creator Jesseca Lockie shares her perspective on advocacy and storytelling online, while Domenic and his mom open up about how gene therapy has transformed his daily life. Real stories, important updates, and conversations shaping the bleeding disorders community.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
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Is there a new treatment for von Willebrand Disease on the horizon? This week on BloodStream, we’re joined by Jess Swann and Dr. Ben Kim from Star Therapeutics to talk about their promising pipeline and what it could mean for the vWD community. From science to support, they share their commitment to innovation and the people at the heart of it all. Plus, Patrick and Amy catch you up on the latest happenings—including the premiere of Dismissed!
Don’t miss this insightful, energizing episode that dives into the future of bleeding disorders care.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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Edward Rogoff, Blood Brother, NY chapter board member, and author of Scary Diagnosis, joins us on today’s BloodStream. We hear the powerful stories behind community tattoos and get an update from PJL on his ankle surgery and recovery. This episode is full of resilience, creativity, and the strength we find in unexpected places.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes: http://www.linkedin.com/in/edward-rogoff-6624366
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Do you ever wonder who’s actually getting gene therapy around the world? So have we! Dr. Hank Greely from Stanford and Simon Fletcher, a nurse and PhD Candidate from Oxford, break it down in a way that’s eye-opening and real. Then stick around for Dr. Radek Kaczmarek’s update on the latest game-changing research. Two fascinating chats, one episode, this is BloodStream you don’t want to miss!
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
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What do a heartfelt short film, a Hollywood actress, and a powerful community story all have in common? This week’s BloodStream Podcast. Actress Sami Rappoport shares how her grandfather’s life with hemophilia inspired her latest project, and Dr. Joanna Davis sits down with Barb Forss and Jeffrey Moualim for a conversation you won’t want to miss.
Jeffrey Moualim, Barbara Forss and Joanna Davis, M.D., discussion is in conjunction with CHESFoundation/LadyBugs Program
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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Phil Gattone joins the latest BloodStream Podcast to preview NBDF’s upcoming Bleeding Disorders Conference, coming mid-August. Plus, Amy and Patrick take a trip down camp memory lane, sharing summer stories from their days at hemophilia camp. Tune in for a mix of updates and nostalgia.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film.
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Our bud, Max Feinstein, is back with us to share the outcome of his elbow surgery and he surprises us with a cover of Hemophiliac of Love (!!). Plus, the most pressing question when it comes to gene therapy for hemophilia B: How long does it last? Hanna does a deep dive into that very question with guest, Dr. Andrew Davidoff.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
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Rick Lindfors is cool. He lives with Type 3 von Willebrand and is in the Minnesota Search and Rescue Dog Association. He sits down with Patrick to chat about how he saw it as an opportunity to give back to his younger self, who, for a time, didn't have anyone coming to rescue them. Listen in to his inspiring story - only on BloodStream!
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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Dr. Erik Berntorp (medical doctor, researcher, and professor at Lund University in Sweden) joins us to discuss something special related to von willebrand disease and Matthew Zachary, award-winning Cancer Maverick, Keynote Speaker, and Pioneering Podcaster sits down with Patrick to chat all things advocacy and media!
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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New treatment options are here for the hemophilia community! Learn more in Patrick’s conversation with Craig Benson and our latest Gene therapy segment that focuses on the psychological impact of gene therapy. Plus, we share news about the Genentech and Spark integration.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film.
Show Notes: Subscribe:
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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Stop the Bleeding! is celebrating 14 seasons of using comedy and entertainment to raise awareness and educate about hemophilia and other bleeding disorders. Join creator, director, and star, Patrick James Lynch, in a retrospective with director and writer Jim Fagan as they reminisce about the show’s characters and conflicts, and how entertainment & digital media was used to engage, educate, and inspire people with chronic conditions.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Watch the trailer for the latest season!
AWARDS & HONORS
2018 LA Web Fest - Best Premise for a Comedy Series (Winner); Best Cinematography, Best Editing (Nomination)
2017 Imagen Awards - Best Web Series (Nomination)
2017 Brooklyn Web Fest - Best Ensemble (Nomination)
2014 National Hemophilia Foundation - Meritorious Service Award (Winner)
2013 Hemophilia Federation of America - Health & Wellness Award (Winner)
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film.
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Join us for an episode dedicated to aging with hemophilia, with several stories from our community. We hear from Jeffrey Moualim & Barb Forss, and Patrick sits down with Prisilla Oren, while Hanna chats with Walter Justus. It’s a special episode to celebrate the strength of our community.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film.
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NBDF CEO, Phil Gattone, is back on the show to share his thoughts on the current events happening in our bleeding disorder community. Plus, Hanna speaks with Stanford law professor Dr. Hank Greely and legendary hematologist Dr. Margaret Ragni about how we know when gene therapy is the right choice—and is our system ready to support it? And, an interview with the founder of Hope Runs Red, Breana Sinkfield. All this and more!
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film.
Show Notes:
Visit Hope Runs Red and watch or share your story!
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Potential Medicaid cuts are looming that could affect our community. Hear how you can take action! We also have exciting news about a clinical trial for von Willebrand’s disease and a special community story from Kayla Klein and her mother, Nancy Rodgers. Plus, Patrick has some fantastic updates from the WFH’s Comprehensive Care Summit in Dubai.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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Medicaid Cuts - Take Action Today!
Please call or email the offices you visited in March and remind your lawmakers that Medicaid is a lifeline: ask them to reject Medicaid funding cuts and other policies that would reduce coverage and disrupt care. For email, contact the staffer you met with at Washington Days (check your sent mail for the thank you notes). If you no longer have contact information for your lawmakers’ offices, you can call the Capitol switchboard at 202.224.3121 and ask them to connect you. Say or email:
I am [calling/emailing] as a member of the bleeding disorders community and as a constituent to ask you to reject cuts to federal Medicaid funding. I am relying on you, as my Senator/Representative in Congress, to protect Medicaid from funding cuts and other policies that would reduce coverage and care.
Medicaid covers life-sustaining treatment and care for up to one-third of the bleeding disorders community. Without Medicaid, low-income people with bleeding disorders will have no access to the regular care they need to prevent or treat painful, debilitating, and potentially life-threatening bleeding episodes. People will experience preventable health complications – and overall healthcare costs will rise.
Please stand with the bleeding disorders community and so many others who rely on Medicaid, and reject cuts to this program that provides essential coverage to vulnerable individuals across the country.
**
Hemab Therapeutics Announces Start of Velora Pioneer, a Phase 1/2 Clinical Trial Investigating HMB-002 for the Treatment of Von Willebrand Disease: Press Release
More information about the vWD clinical trial participation
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One of our most stacked episodes in a while, featuring a chat and new music with Blood Brother, Trevor Martin. We also have Dr. Richard Lemon on the latest Gene therapy segment discussing the implications of recent hemophilia B gene therapy data. Plus, Allegra Hill and Kimberly Durdin from the only Black-owned birthing center in LA, and the visionary subjects behind our upcoming documentary Deliver Us. AND NYLI’s Shanthi Hegde & Eliza Marie VanZweden! Whew! 😅
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
Subscribe:
The BloodStream Podcast
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
To learn more about Trevor and hear his music, visit trevormartinmusic.com
To learn more about Trevor Martin's treatment, visit Hemlibra.com
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On April 1st, the Administration announced drastic changes and reductions to the federal health programs, one being the Division of Blood Disorders CDC, greatly affecting the bleeding disorders community. To discuss these concerns, we welcome a familiar face to many of you - Johanna Gray, federal policy advisor to NBDF and all-around wonderful human.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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The CDC cuts are of particular concern to our community. The Division of Blood Disorders’ work traces back to the 1980s’ tainted blood crisis, when CDC investigators were the first to discern and warn of HIV’s transmissibility through blood and blood products. To this day, the Division serves the bleeding disorders community and the nation at large through its public health surveillance activities – including maintaining a laboratory with blood samples dating back to 1996. The Division also funds the collection of key data on bleeding disorders through its “Community Counts” program, and supports educational outreach to increase patient and provider understanding of hemophilia and its complications. Elimination of the Division, its clinical repository, and its institutional knowledge would be a huge loss for the bleeding disorders community.
WHAT CAN YOU DO?
Call the Capitol switchboard: (202) 224-3121
*Anyone can call this number and get connected with their Senators and Representative.
I am calling as a member of the bleeding disorders community and as a constituent to ask that you protect the federal hemophilia programs at the CDC. The recent HHS restructuring eliminated essentially all of the staff at the CDC’s Division of Blood Disorders, where the hemophilia programs are housed. These programs:
- Help to collect important data on bleeding disorders which in turn helps lead to new and more effective treatments.
- Provide funding for education and outreach to increase patient and provider understanding of hemophilia.
- Help to protect the safety of our nation’s blood supply.
I’m very worried about what this means for people with bleeding disorders and our country.
Please work to restore the staffing and activities of the CDC Division of Blood Disorders.
I am relying on you, as my Senator/Representative in Congress, to take action to ensure that the staff for this program are reinstated and to work to protect the funding for this critical program.
**
For years, people with hemophilia A waited for a cure, while inhibitor patients were left behind—but now, after setbacks and failed launches of several gene therapies, investors think patients aren’t interested. By taking this short survey, you can make your voice heard and show investors that our community still wants a durable gene therapy, but this time for both hemophilia A with or without inhibitors. Take the survey here
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In this special pop-up episode of the Bloodstream Podcast, host Patrick James Lynch discusses the discontinuation of two Takeda bleeding disorder products with Anthea Cherednichenko, Takeda's VP Franchise Head Hematology and Transplant. Additionally, the 'I'm Fine' segment, sponsored by Sanofi, explores why people cling to the notion of being 'fine' and the importance of embracing vulnerability for true resilience.
I’m Fine is presented by @SanofiUS
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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HFA Symposium is this weekend, and we have CEO Dan Kelsey on the podcast to tell us all about it! Plus, a gene therapy segment with the fantastic Brendan Hayes about what she’s hearing in the community about gene therapy for hemophilia B.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
Subscribe:
The BloodStream Podcast
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
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On this special pop-up episode of the Bloodstream podcast, we’re back with another 'I'm Fine' segment, which delves into the complexities of honesty and mental health. This episode features insights from Gabi Flores on the importance of addressing mental and emotional wellbeing, particularly for those managing chronic conditions.
I’m Fine is presented by @SanofiUS
Please share this survey with any friends you have with hemophilia A with or without inhibitors, who will help us educate the investment community on the need for new and better therapies.
$50 gift card to each of the first 50 survey respondents!
https://www.surveymonkey.com/r/geneventiv-2
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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Patrick chats with NBDF CEO, Phil Gattone, after his first Washington Days! Plus, Dr. Nathan Connell gives a terrific ASH Recap full of the latest research and development in bleeding disorders and Amy speaks with FLOW co-host, Jessica Richmond about women with bleeding disorders.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
Subscribe:
The BloodStream Podcast
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
Connect with BloodStream Media:
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On this episode we explore the concept of projecting a façade of being 'fine' while struggling internally, especially within the hemophilia community. Featuring insights from Austin Lerner, the episode delves into the importance of expressing vulnerability, embracing un-fine moments, and fostering open communication to truly address one's challenges.
I’m Fine is presented by @SanofiUS
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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We celebrate Rare Disease Day because we love our Rares! Also, folks from WHF join us to share their comprehensive summit and the gene therapy segment is back with a new host and Dr. Mark Kay and genetic counselor, Kaylee Dollerschell.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
Subscribe:
The BloodStream Podcast
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
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We’ve got distinguished patient advocate Corbin Whittington on the show. Corbin lives with chronic inflammatory demyelinating polyneuropathy (CIDP) and is an executive coach and chair for numerous Boards. He’s an incredible leader in the rare disease community and we’re excited to have him on BloodStream! We’ll also hear from Wes Michael from Rare Patient Voice.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org
Learn more about survey for the bleeding disorder community from Rare Patient Voice at www.rarepatientvoice.com
Check out Corbin Whittington’s LinkedIn page
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Dr. Ben Samelson-Jones is on the show highlighting the advances of Gene Therapy in Hemophilia B and we’ll also share an exciting staffing update for Star Therapeutics, a biotech with an encouraging vWD pipeline. We’ll tell ya all about it!
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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The BloodStream Podcast
To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org
Connect with BloodStream Media:
BloodStreamMedia.com
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Behind the Mystery is the only television series featuring rare, genetic diseases, and we have creators and producers Carri Levy and Molly Mager, to tell us all about it and how to watch. Also, from the Living with Hemophilia blog, Philippines residents Cza and Jared share their story about living with severe hemophilia B. All this and more!
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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The BloodStream Podcast
To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org
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BloodStreamMedia.com
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Patrick and Amy reflect on their favorite moments of the BloodStream year, plus Max Feinsten is getting surgery and we get to hear about it. And then, another I’m Fine segment with Michael Bishop.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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The BloodStream Podcast
I’m Fine is presented by @SanofiUS
Check out season 14 of Stop the Bleeding!
To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org
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Patrick sits down with Jonathan Cappiello, an ultra-rare who hosts the podcast, 1 out of 20 (who also has a connection to Ryan White!). Plus, our final Gene Therapy segment of the year and those WHF USA announcements. All that and more on BloodStream!
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
Subscribe:
The BloodStream Podcast
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
It’s a Whole New World brought to you by @CSLBehring.
The 1 out of 20 Podcast featuring PJL
Check out season 14 of Stop the Bleeding!
To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org
We’ve got HFA CEO Dan Kelsey on the show to give a 2025 preview for the organization. NBDF and Believe Limited have partnered on a new digital advocacy storytelling project, called Voices for Policy Change and we’ll tell you all about it! Plus, the new season of Stop the Bleeding! And the I’m Fine segment with Michael Bishop.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
Subscribe:
The BloodStream Podcast
I’m Fine is presented by @SanofiUS
Check out season 14 of Stop the Bleeding!
To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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On the latest Gene Therapy segment, we host Blood Brothers Rick Starks, Colin Johnston, Bobby Wiseman for a roundtable discussion to hear their unique thoughts about the gene therapy landscape. We also honor Jess McClean (Page)’s life and her contribution to the bleeding disorder community.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
Subscribe:
The BloodStream Podcast
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
It’s a Whole New World brought to you by @CSLBehring.
Connect with BloodStream Media:
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NBDF CEO Phil Gattone traveled to regional chapters (and got infused, y’all) to meet communities on the ground, and he tells us all about it! Plus, big news for the community with a few recent therapy approvals and the latest I’m Fine segment with Michael Bishop.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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The BloodStream Podcast
I’m Fine is presented by @SanofiUS
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Alternative Funding Programs are a nightmare new insurance tactic that has experts concerned. We’ve got Zack Duffy and Roland Lamy from the Hemophilia Alliance to break it down and tell you what to look out for. Plus, HFA’s Project ECHO and the latest Gene Therapy segment, all about Myths and Misconceptions.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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Want more information on Alternate Funding Programs? Roland said to Google it.
But, here’s some more stuff:
- AFP White Paper
- The Present and Future of Alternative Funding Programs for Specialty Drugs
HFA Project ECHO: Recognition and Care of Women with Bleeding Disorders
Oct 28 2024, 12:00 pm - 1:00 pm EST
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
Genentech Patient Foundation is dedicated to making sure that people with hemophilia A can get access to treatment. No matter what type of health insurance you have, and even if you have none at all, there may be some potential options available to help you afford your medicine.
To learn more about these resources and find out if you are eligible, visit www.HemophiliaAccess.com
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We recap NBDF’s BDC and welcome back PPTA CEO Anita Brikman to share more about International Plasma Awareness Week. Plus, the latest I’m Fine featuring guest host Michael Bishop.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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Help celebrate International Plasma Awareness Week!
I’m Fine is presented by @SanofiUS
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Coming to you LIVE from NBDF’s Bleeding Disorder conference, Patrick is with CEO Phil Gattone right after Opening Session. A walk and talk you don’t wanna miss! Also, hear how HTCs have operationally aligned to administer gene therapy with Zack Duffy and Roland Lamy from the Hemophilia Alliance on the latest Gene Therapy segment. Plus, an interview with Janet Brewer from CHES.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
Subscribe:
The BloodStream Podcast
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
Connect with BloodStream Media:
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Patrick has an exclusive conversation with the filmmakers of What We Wished We Could Be, a story about a couple who must sacrifice their dreams in order to confront the consequences of the contaminated blood scandal. Patrick sits down in-studio with screenwriter, Jenna-Louise Hawkins; Director, Luke Shelley; and producer Sophie Stacy about the challenges of making the film, Jenna’s personal connection to the UK contamination scandal, and how storytelling can honor the heartbreak, courage and sacrifice of the victims of the blood scandal, and their loved ones. Plus, the second installment of Jack Bridge’s interview with Luke Pembroke in I’m Fine segment.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
Subscribe:
The BloodStream Podcast
Visit BEQVEZ.com to learn more about gene therapy, sign up for additional information, and listen to real patients who are now living differently.
To learn more about Miranda and others in the hemophilia community, please visit www.treathemA.com
I’m Fine is presented by @SanofiUS
What We Wished We Could Be film: Website - Instagram - Trailer
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Patrick survives his first tornado warning and we’ve got Joana Baquero sharing education and advocacy updates on Factor 1 Deficiency and Tammy Black from the Immune Deficiency Foundation. Plus, a new Gene Therapy segment with Jim Kenny, an expert on pharmacy reimbursement.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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The BloodStream Podcast
To read “What are fibrinogen disorders?” PDF, CLICK HERE.
Tammy’s documentary Compromised: Life without Immunity
Visit BEQVEZ.com to learn more about gene therapy, sign up for additional information, and listen to real patients who are now living differently.
I’m Fine is presented by @SanofiUS
Listen to the Global Hemophilia Report
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Is there a darker side to the extraordinary accomplishments of people with bleeding disorders? Guest segment host, Luke Pembroke, ask just that on the latest I’m Fine, featuring blood brother and Paralympian, Jack Bridge. Also, Patrick and Amy hit up the Chief Patient Officer Summit and got insight on what true patient inclusivity is all about. Plus, Brandon Young and the formation of a rare disease intercenter within FDA.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
Subscribe:
The BloodStream Podcast
To learn more about the FDA’s Rare Disease Innovation Hub: EveryLife Foundation
Visit NBDF’s Steps for Living
Brandon Young’s Country Boy Fishing
Visit BEQVEZ.com to learn more about gene therapy, sign up for additional information, and listen to real patients who are now living differently.
I’m Fine is presented by @SanofiUS
Connect with BloodStream Media:
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On this episode, Patrick James Lynch honors the late Neil Frick, Senior VP for Medical Programs at the National Bleeding Disorders Foundation, recognizing his invaluable two-decade contribution to the bleeding disorders community. We also discuss hemophilia B gene therapy with Dr. Mark Redding, focusing on unique clinical trial designs and the role of steroids. Additionally, Makenna Dietrich shares her journey in bleeding disorder advocacy. The episode includes updates from Star Therapeutics on subcutaneous therapy for von Willebrand disease and insights on closing racial health equity gaps in the US. We also invite you to help pick a new BloodStream “theme song”.
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Show Notes:
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Hemophilia Uncensored Social Media: Instagram & TikTok
Star Therapeutics Presents Clinical Data for VGA039, a Subcutaneous Therapy for the Treatment of Von Willebrand Disease (VWD)
How the U.S. can close longstanding racial health equity gaps
Visit BEQVEZ.com to learn more about gene therapy, sign up for additional information, and listen to real patients who are now living differently.
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
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Patrick sits down with HTC social workers, Kathaleen Schnur and Dianne Bartlett, about the ever-evolving role of social workers in the HTC comprehensive care system. Plus, on the latest I’m Fine, Patrick answers the question, What do clotting factor levels mean to me in this new age of hemophilia treatment?
Show Notes:
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The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
On the Shoulders of Giants Film
Watch the movie and host a screening: ontheshouldersfilm.com
Beyond our Blood
Watch the short films and download the facilitation guide: beyondourblood.com
Connect with BloodStream Media:
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Patrick sits down with Thomas Bartlett, Myasthenia Gravis patient and advocate, about the unique struggles of living with an invisible chronic disorder. Also, we all know if you want real answers — ask a nurse. We’ve got Andrea Buxton, Nurse Practitioner at the Hemophilia Outreach Center in Green Bay, WI, with her account of the first commercial dosing of gene therapy for hemophiia B.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
On the Shoulders of Giants Film
Watch the movie and host a screening: ontheshouldersfilm.com
Beyond our Blood
Watch the short films and download the facilitation guide: beyondourblood.com
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Mild hemophilia truly does matter and we’re with Shellye Horowitz, formally with HFA, to hear about HFA’s Mild Matters program. Plus the final Elite Athletes segment with Paul McLaughlin and I’m Fine with Luke Pembroke.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I’m Fine and Elite Athletes with Hemophilia are presented by @SanofiUS
Mild Matters Program
On the Shoulders of Giants Film
Watch the movie and host a screening: ontheshouldersfilm.com
Beyond our Blood
Watch the short films and download the facilitation guide: beyondourblood.com
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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Our blood brother buds, Clive Smith & Laurence Woollard join us today to share the latest from the ongoing saga of UK Blood Inquiry, plus our latest Gene Therapy segment has Mason Buxton’s story (the first hemophilia B patient to be commercially dosed with gene therapy!).
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
On the Shoulders of Giants Film
Watch the movie and host a screening: ontheshouldersfilm.com
Beyond our Blood
Watch the short films and download the facilitation guide: beyondourblood.com
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
On this special episode of the BloodStream Podcast, we explore interferons in the treatment of polycythemia vera (or PV). This episode is brought to you by PharmaEssentia.
If you’d like to learn more about polycythemia vera, check out our sister show PV Pod: Stories from the Marrow (brought to you by BloodStream Media and PharmaEssentia).
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Hear about the premiere of the On the Shoulders of Giants film from HFA Symposium with Patrick and Amy. Plus the I’m Fine segment is back with Luke Pembroke and Hazri Aris is featured on the latest Elite Athletes segment.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
On the Shoulders of Giants Film
Watch the movie and host a screening: ontheshouldersfilm.com
Beyond our Blood
Watch the short films and download the facilitation guide: beyondourblood.com
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
We have newly appointed NBDF CEO, Phil Gattone with us sharing his background and his vision for the organization and community. And, we have the story of the first commercially dosed patient of hemophilia B gene therapy. Hear from Jamison Buxton, the father of the patient…who also happens to be the director of the HTC.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
Connect with BloodStream Media:
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Dr. Glenn Pierce is with us to share what to expect from the upcoming WFH Congress in Madrid, and Amy sits down with President and CCEO of the Plasma Protein Therapeutics Association (PPTA), Anita Brikman. FLOW co-host Jessica Richmond sits in for Patrick and we’ll finish up with an Elite Athletes segments will feature bleeding disorder community member, Ricardo Ramirez.
Show Notes:
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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We’re back with Dr. Akshat Jain who shares highlights in bleeding disorder research from ASH 2023, plus the differences between hemophilia A vs hemophilia B gene therapies with Dr. Mark Redding. We close out with our latest Elite Athletes segments featuring bleeding disorder community legend, Perry Parker. Don’t miss it!
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
Connect with BloodStream Media:
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HFA CEO Dan Kelsey joins Patrick and Amy to respond to recent organizational changes, followed by Blood Brother, Carl Weixler, who shares a bit about HFA’s history, mission, and current state. Also, a tribute to Rare Disease Day, led by voices from BloodStream Media.
Show Notes:
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The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Check out the Everyday Life Foundation hosting Bombardier Blood
Everyday Life Foundation Legislative Asks
This Rare Disease Day segment is brought to you by Genentech. Genentech has several resources to help caregivers navigate hemophilia including stories from other members in the community. Please visit www.thecommunityhelps.com to learn more.
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NBFD landed a new CEO, and HFA has responded to recent organizational changes; plus, we hear from Dr. Mark Reding and Dr. Steven Pipe about their excitement over gene therapy being added to the treatment landscape in hemophilia. We close with @theHemeNP, Maya Bloomberg talkin’ Rare Disease Day.
Show Notes:
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The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
Connect with BloodStream Media:
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We’ve got a terrific interview with Kathy MacKay and Dana Kuhn about the efforts the Committee of Ten Thousand (COTT) is taking to preserve documents from the tainted blood tragedy. And another Elite Athletes segment featuring blood brother and cyclist, Giovanny Pernudi. Oh …and Patrick had a bath bleed.
Show Notes:
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To learn more about the Committee of Ten Thousand and to get involved, visit www.COTT1.org
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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It’s a New Year and BloodStream is back with a terrific episode. Major changes at @HFA leave Patrick wondering about the future of one of our beloved national organizations and we have folks from the FAIR initiative and CHES to share their 2024 vision for the women in bleeding disorders movement (heck yeah!). Plus, a brand new segment this year on gene therapy (whoo!) - all this and more!
Show Notes:
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The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Join the Movement - Equity for Women with Bleeding Disorders
FAIR Coalition
CHES - Programs for Women with Bleeding Disorders
Take Action Today! - Click HERE
It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.
Connect with BloodStream Media:
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We’ve got SNL screwups, the mainstream acronyms continue to butcher rare blood diseases. Plus, we’ve got a new ELITE ATHLETES segment with Anthony Pezzillo (who recently became an uncle; or expanded his uncledom) and I’m Fine, this time with a focus on the caregiver experience with Jessica Bombardier. We’ll get into it all, AND MORE, on this episode.
Show Notes:
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The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I’m Fine and Elite Athletes are presented by @SanofiUS
Sanofi seeks to expand the idea of what’s possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com
Sanofi aims to raise the bar for the patients living with hemophilia. Reimagine what’s possible by visiting Rareblooddisorders.com to hear more about Sanofi’s dedication to the bleeding disorder community.
Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation
Connect with BloodStream Media:
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The World Health Organization made a decision that has heads scratching that could seriously impact hemophilia patients across the globe and a new I’m Fine segment with blood brother, Justin Levesque. Plus, Worlds AIDS Day with Maya Bloomberg and Patrick is pain-free (or close to pain-free) for the first time in a long (!!) time.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I’m Fine and Elite Athletes are presented by @SanofiUS
Sanofi seeks to expand the idea of what’s possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com
Sanofi aims to raise the bar for the patients living with hemophilia. Reimagine what’s possible by visiting Rareblooddisorders.com to hear more about Sanofi’s dedication to the bleeding disorder community.
Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation
Connect with BloodStream Media:
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Hear what Patrick and Amy are grateful for as we play The Gratitude Game, because ‘tis the season, y’all! Also, A new (and fantastic!) I’m Fine segment on the dark side of resilience and Ph.D. Olav Versloot on the latest Elite Athletes segment.
Show Notes:
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Amy turns the table on the latest I’m Fine and puts Patrick in the hot seat as he shares how and why he resists change and the effect that has on his loved ones. Plus, Maya Bloomberg, @thehemenp, is back with a segment on family dynamics and holiday logistics with a bleeding disorder. Check it out on the latest episode of BloodStream.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I’m Fine is presented by @SanofiUS
Sanofi seeks to expand the idea of what’s possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com
Sanofi aims to raise the bar for the patients living with hemophilia. Reimagine what’s possible by visiting Rareblooddisorders.com to hear more about Sanofi’s dedication to the bleeding disorder community.
Segment brought to you by Genentech, please visit www.treathemA.com to learn more.
Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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The BloodStream Podcast is off this week but we have something very special for you. Introducing PNH: Facts, Fiction & FYI.
Dive deep into the critical history, medical background, and foundational insights of Paroxysmal Nocturnal Hemoglobinuria (PNH) in our inaugural episode. Join us as we set the stage for a comprehensive exploration of this rare blood disorder.
Content Independently Created by Bloodstream Media. Novartis is our exclusive advertising partner.
Subscribe to PNH: Facts, Fiction & FYI.
Mosi Williams, blood brother and social worker at an HTC in Northern California joins Patrick for the latest I’m Fine segment with a candid discussion about treatment transitions. And we have UK rugby player, Jess Page, who is living with hemophilia on our Elite Athletes with Hemophilia, the companion segment to the new film REDEFINING IMPOSSIBLE from Believe Limited.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I’m Fine and Elite Athletes with Hemophilia are presented by @SanofiUS
Sanofi seeks to expand the idea of what’s possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com
Sanofi aims to raise the bar for the patients living with hemophilia. Reimagine what’s possible by visiting Rareblooddisorders.com to hear more about Sanofi’s dedication to the bleeding disorder community.
Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation
WFH statement on the Israel-Palestine crisis
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We’re back with another episode of BloodStream featuring Maya Bloomberg’s 5 tips for sexual health with a bleeding disorder and AI in Healthcare with Kevin Mills and Pat Mancini. Plus a new SHEmophilia segment and a I’m Fine segment with Mark Skinner.
Show Notes:
Subscribe:
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
To support CHES's program for women with bleeding disorders, to attend CHES events for individuals and families in the inhibitor community. Or simply to get in touch with comments and ideas please reach out to us at www.ches.education
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Dr. Akshat Jain, Director Inherited Bleeding Disorders at the Loma Linda University Children's Hospital, is here with a wide-ranging conversation, including gene therapy access and affordability in low resource areas. Plus, a new Elite Athletes segment featuring San Jose Sharks Head Coach, David Quinn and another installment of I’m Fine with a spotlight on–leadership. Be careful, leaders, we’re coming for ya!
Show Notes:
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Watch Redefining Impossible for free HERE
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Elite Athletes and I’m Fine segments presented by @Sanofi
Connect with BloodStream Media:
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Amy is with guest co-host Joshua Sterling Bragg with Back to School & Sickle Cell Awareness Month resources and a new I’m Fine segment about embracing change in hemophilia care. Plus Maya (@theHEMENP!) is back with thoughts on sports and fitness and author Tim Ryan join us!
Show Notes:
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Back to School Resources at Steps for Living
Sickle Awareness Month Resources
Mental Health Matters Too
Watch Redefining Impossible for free HERE
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Elite Athletes segment presented by @Sanofi
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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Patrick and Amy recap all the happenings at the recent Bleeding Disorder Conference in DC live from The Science Fair! We’ll discuss the rebrand to The National Bleeding Disorder Foundation (NBDF) and several sessions that caused interest, including two gene therapy patients with wildly different experiences. Also, we’ll premiere the first Elite Athletes segment that highlights community members from the Redefining Impossible film.
Show Notes:
Subscribe:
The BloodStream Podcast
Watch Redefining Impossible for free HERE
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Elite Athletes segment presented by @Sanofi
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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Don’t worry, Amy was given only 3 minutes to share her experience of The Eras Tour and then we get to the good stuff! Maya Bloomberg, the @TheHemeNP, shares four specific pillars of successful disclosure and we debut our new segment, I’m Fine. This new segment aims to challenge our “normals” and truly consider the possibilities.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I'm Fine presented by @Sanofi Take a deeper at LevelsMatter.com.
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The National Hemophilia Foundation has a major rebrand coming up and we spoke with outgoing CEO and President Len Valentino about that AND SHEmophilia is back with a story from community member Priscilla Oren. We also share some important Medicaid information - don’t miss this one!
Show Notes:
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You can do three practical things to help further the campaign for better treatment for women with bleeding disorders:
1) sign the petition at change.org: Demand Equity in Healthcare for Women
2) Head over to CHES to submit your recommendations for good doctors and hospitals
3) Sign the 'MASAC Document 264' recommendations at hemophilia.org
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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Our guest today is Dolores Dumas. Dolores is a 73-year-old living with PK deficiency, and was diagnosed as a teen with nonspherocytic hemolytic anemia. During a visit with a new hematologist, she received a definitive diagnosis of PK deficiency. Dolores feels grateful that she finally has a name for her condition.
SHOW DESCRIPTION
Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PKD. Each episode, Just Listen: Voices of PK Deficiency strives to provide listeners with critical education, the latest scientific updates, and voices from the PKD community. Learn more about PKD by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD and Instagram shorturl.at/gmFT4.
TRANSPARENCY STATEMENT
Just Listen: Voices of PK Deficiency and KnowPKDeficiency.com are made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host Rachel Grace and guest Dolores Dumas have been compensated for her time.
Patrick calls in to discuss the first gene therapy for Hemophilia A approved in the United States, while Amy chats with Chris Bombardier and Dru Johnston about season 2 of The Final Summit and Maya Bloomberg shares 5 Tips for a Safe and Fun summer with a bleeding disorders.
Show Notes:
Subscribe:
The BloodStream Podcast
Listen to The Final Summit Season 2 Podcast!
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Connect with BloodStream Media:
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Jessica Lauren Richmond, co-host of the popular FLOW podcast, joins us to discuss all things menstrual health and Amy finally gets to ask –So, how’s your FLOW? We also have James Maple back with a music and self-expression segment that spotlights on community member, Max Feinstein.
Show Notes:
Subscribe:
The BloodStream Podcast
Listen and Subscribe to the FLOW podcast!
Share your FLOW story with us! How's Your Flow Calendly
Tik Tok @howsyourflow
Instagram @howsyourflow
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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Join us as we celebrate World Sickle Cell day on June 19th with contributor Maya Bloomberg, the HemeNP and a conversation with hematologist Dr. Mike Callaghan. Great stuff about equity in healthcare, clinical trial participation, the Sing Me a Story organization, and the Denver Nuggets in the finals. Don’t miss it!
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Sing Me A Story
Connect with BloodStream Media:
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We’ve got a new “SHEmophilia” audio segment brought to us by CHES, as well as Saverio Cimino featured in today’s music and expression segment. Then, Patricks catches up with community member, Michael Bishop. A great episode!
Show Notes:
Subscribe:
The BloodStream Podcast
Saverio Cimino’s Instagram
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
To support CHES's program for women with bleeding disorders, to attend CHES events for individuals and families in the inhibitor community. Or simply to get in touch with comments and ideas please reach out to us at www.ches.education
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Dr. Guy Young joins us for an overview on the newest non-factor replacement therapy for hemophilia A and B, still in clinical trials–Fitusiran. Maya Bloomberg, the HemeNP, is back and so is James Maple with a segment featuring community member and musical artist, Shelby Smoak. We’ll also get a sneak peak of a brand new documentary featuring members of our community!
Show Notes:
Subscribe:
The BloodStream Podcast
Follow Maya Bloomberg @thehemenp
Check out https://shelbysmoak.com/ to listen to more of Shelby Smoak
Listen to PV Pod: Stories from the Marrow
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Segment is brought to you by Genentech. To read about the efficacy and safety profile of this treatment, visit http://treathemophilia.com
Connect with BloodStream Media:
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Gunnar Esiason, son of NFL legend Boomer Esiason, shares his story of living with cystic fibrosis and becoming the advocate he is today. We also speak with Rich Gorman: ethicist (!) on the ethics of gene therapy. Josh reflects on the connection between physical and mental health on Let’s Talk. A packed episode!
Show Notes:
Subscribe:
The BloodStream Podcast
Learn more about Gunnar Esiason and cystic fibrosis here!
Listen to PV Pod: Stories from the Marrow!
Check out the Elite Athletes documentary, REDEFINING IMPOSSIBLE trailer here!
Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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A stacked episode with a new Maya Bloomberg (@TheHemeNP !) segment, music from community member Tamar Mitchell, and Patrick sits down with Dr. Z (Zolotnitsky !) to discuss his PT work it the hemophilia community. All that, and more, on this World Hemophilia Day episode of BloodStream Podcast!
Show Notes:
Subscribe:
The BloodStream Podcast
Celebrate World Hemophilia Day on social media!
Check out the Elite Athletes documentary, REDEFINING IMPOSSIBLE trailer here!
Listen here to Tamar Mitchell’s new EP:
Apple Music
Spotify
Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Patrick and Amy discuss the reaction to Patrick’s viral Warning to the Community and we can all agree that we struck a nerve! Also, our first segment with Maya Bloomberg, the @HemeNP where she discusses anemia. Plus, Blood Brother John Christen sharing his work, Bleeding China and the latest installment of Let’s Talk.
Show Notes:
Subscribe:
The BloodStream Podcast
Check out Bleeding China on Substack by Blood Brother, John Christen
Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Let’s Talk shares tips on how to care for your own or someone you love’s mental health and strives to eliminate the stigma associated with this discussion within the bleeding disorders community. Visit Letstalkmh.com and click Resources.
Brought to you by Sanofi
Connect with BloodStream Media:
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What does taking ownership of your bleeding disorder look like? Patrick shares his thoughts and NHF’s education staff, Brendan Hayes and Heather Hicks join us to debut a new program that could change the game. Also, we introduce Maya Bloomberg, a certified nurse practitioner, who is addressing blood disorders through social media. A can’t miss episode!
Show Notes:
Subscribe:
The BloodStream Podcast
Take control of your health care with NHFs Own Your Path program!
This app-based program will provide you with information to navigate life with a bleeding disorder. Being able to stay on top of your treatment is easier if you are able to manage your stress, get enough sleep, move your body, and stay on top of your nutrition.
Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Segment is made possible by Genentech.
Connect with BloodStream Media:
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We recognize and celebrate Rare Disease Day on BloodStream! A day to raise awareness, share your story, and appreciate the community we find ourselves in. We’ll also get an interview with community member, Murai Johnson, to honor of Black History Month and Josh is back with another Let’s Talk: Living in the Almost.
About The Infected Blood Inquiry - The Haemophilia Society
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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On this bonus episode, we continue to honor Black History Month with interviews with blood brother, Bobby Wiseman, and Dima Henricks, sickle cell advocate and founder of #ThroughThePain. Plus, a warning for the hemophilia community with care from Patrick and Amy.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
BloodStream welcomes back NHF Vice President of Public Policy, Nathan Schaefer to talk everything Washington Days and advocacy! Plus, an interview with community member and social worker, Mosi Williams and a new segment of The Well. Oh, and Amy and Patrick share some personal advocacy wins and bummers too!
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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BloodStream honors Black History Month with a series of interviews with community members and KOL’s Join us for this pop-up episode with Connie Montgomery as she shares her perspective with James Maple. Plus, Josh Bragg is back with another Let’s Talk featuring community member, Mike Hargett.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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We’ve got Dr. Steven Pipe with us to discuss the first gene therapy approved for hemophilia B, HEMGENIX. As the lead investigator of the HEMGENIX trial, Dr. Pipe details what patients need to know about HEMGENIX and what questions to consider when speaking with their hematologist. A must listen episode!
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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A legislative package was approved at the end of 2022 with several wins and several disappointments for the rare disease community–we talk about it! Also, we welcome Aditi Kantipuly, a Research Collaborator for the CDC for a chat about health equity. Plus, Jessica Lauren Richmond is back with The Well, a segment featuring 5 steps to make your new year’s resolutions stick.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
As part of H.R. 2617, Congress delivered several crucial programs and reforms that are important to the rare disease community — measures that NORD and the rare community fought for and will help speed efforts to develop effective therapies and expand access to care.
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It’s the final episode of 2022! Patrick gives an update on his ankle journey, through the good and the bad, PLUS a terrific interview with NHF CEO and President, Dr. Len Valentino. We’ll close with a Let’s Talk segment on focus on trauma, depressive swings featuring our own, Patrick James Lynch.
Watch Jonah Hill’s Stutz on Netflix
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Episode and Segment Sponsors:
Listen in to Let’s Talk, a monthly segment with your host, Josh Bragg. Let’s Talk shares tips on
how to care for your own or someone you love’s mental health and strives to eliminate the
stigma associated with this discussion within the bleeding disorders community. Visit
Letstalkmh.com and click Resources.
Brought to you by Sanofi
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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The first gene therapeutic for hemophilia (specifically for hemophilia B) was approved last week, and with that –a new era of treatment options has begun! Amy and Patrick share first reactions to the approval news and toss out opinions on how this news may impact our community in 2023. We also have Michelle Rice with us to share how her work is continuing to bring access to treatment for rare disease patients. Plus, a new segment of The Well on Relationships.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Episode and Segment Sponsors:
CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history
Connect with BloodStream Media:
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In a terrific turn of events, Patrick got an invite to the prestigious WFH Gene Therapy Roundtable featuring a number of experts discussing the challenges and opportunities presented by gene therapy. So that means Patrick will report back all the key takeaways! And, it’s gratitude season, so naturally we share what we are most thankful for this year. Plus, a new Let’s Talk about dating and relationships.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Episode and Segment Sponsors:
Genentech, open enrollment is right around the corner and Genentech has resources to support you through this process. To learn more about these resources, visit www.HemophiliaAccess.com
CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history
Connect with BloodStream Media:
BloodStreamMedia.com
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A good one this week! Erin Willis, associate professor at the University of Colorado joins us to discuss the increasingly popular use of patient influencers in pharmaceutical marketing. The goal of her research is to explore how message design can influence people's understanding about their health and choices. Also, Jessica Richmond is back with another segment of The Well as she investigates how the past informs the present.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Episode and Segment Sponsors:
CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history
Genentech has local Clinical Education Managers (CEMs) who offer one-on-one support throughout your entire hemophilia journey.
To get in contact with a CEM, visit www.TalkToACEM.com
Connect with BloodStream Media:
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Patrick shares life post ankle surgery and wonders if everything from now on will be impacted by hemophilia. Plus, a fantastic interview with Hemophilia of Gerogia’s Director of Advocacy, Michelle Conde AND members of Glanzmann's Research Foundation, Peter Z and Taylor Anne. We’ll cap the episode with another Let’s Talk mental health segment on acknowledging your past.
Show Notes:
Subscribe:
The BloodStream Podcast
Check out the work Glanzmann's Research Foundation is doing!
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Episode and Segment Sponsors:
Listen in to Let’s Talk, a monthly segment with your host, Josh Bragg. Let’s Talk shares tips on
how to care for your own or someone you love’s mental health and strives to eliminate the
stigma associated with this discussion within the bleeding disorders community. Visit
Letstalkmh.com and click Resources.
Brought to you by Sanofi
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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On the heels of National Coming Out Day, BloodStream is joined by Dr. Nathan Connell, Clinical Chief of Hematology at Brigham and Women’s Faulkner Hospital to discuss LGBTQ+ health issues in the bleeding disorder community. Plus, Patrick reconnects with Annelise Ellis, longtime friend and fellow person with a bleeding disorder, as she shares with us her story of how von Willebrand disease impacted her first pregnancy, labor, and delivery.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Episode and Segment Sponsors:
Genentech, open enrollment is right around the corner and Genentech has resources to support you through this process. To learn more about these resources, visit www.HemophiliaAccess.com
CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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James Maple, sitting in for Amy, and Patrick present the audio from BloodStream’s Diversity, Equity, and Inclusivity panel during National Hemophilia Foundation’s Bleeding Disorders Conference as well as the latest from the Let’s Talk mental health segment. Plus, news from ICER on gene therapy!
Show Notes:
Subscribe:
The BloodStream Podcast
Article:
Hemophilia gene therapies from BioMarin, CSL pick up an early ICER endorsement
Presenting Sponsor:
- Takeda, visit bleedingdisorders.com to learn more.
Episode and Segment Sponsors:
-
CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history
-
Sanofi, visit ShareYourWhy.com to meet the CoRe team and hear stories from the hemophilia community.
-
Pfizer, if you have sickle cell disease, how often do painful crises have you visiting the doctor? Learn more at ClinicalTrialSCD.com
Connect with BloodStream Media:
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BloodStream welcomes back frequents collaborators, Cazandra Campos-Macdonald & Laurence Woollard. Caz shares an emotional update on her chronic pain and mental health, while Laurence tells us about the impressive recent episode of Global Hemophilia Report featuring women with bleeding disorders.
Show Notes:
Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.
Subscribe to BloodStream Podcast
Listen to the latest from BloodStream’s FLOW podcast
Listen to the Pain Podcast
Brought to you in party by Genentech #Genentech #hemophiliacommunity #BleedingDisorders #Hemophilia #HemophiliaA #Healthcare
Brought to you in part by CSL Behring. To learn more, check out www.HemEvolution.com
If you have sickle cell disease, how often do painful crises have you visiting the doctor? Pfizer is now enrolling a research study of an investigational medicine that may help to prevent pain crises caused by sickle cell disease. If you have seen a healthcare provider for 2 to 10 sickle cell crises in the past year, you may be able to participate. To speak with the study team, visit ClinicalTrialSCD.com. With your help, we can pursue new treatment options for sickle cell disease. Learn more at ClinicalTrialSCD.com or click the link in the show notes.
Connect with BloodStream Media:
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Amy and Patrick are joined by Believe Limited colleague and new BloodStream Podcast correspondent James Maple! Plus, Let’s Talk is back with a segment of suffering that features interviews with community members Dwayne Whitis and Heather Hogan, and a follow-up interview with Dr. Hanny Al-Samkari on the 2nd most common bleeding disorder that you don’t know about!
Presenting Sponsor: Takeda (bleedingdisorders.com)
Show Notes:
Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.
Learn more about HHT
Subscribe to BloodStream Podcast
Listen to the latest from BloodStream’s FLOW podcast
Listen in to Let’s Talk, a monthly segment with your host, Josh Bragg. Let’s Talk shares tips on
how to care for your own or someone you love’s mental health and strives to eliminate the
stigma associated with this discussion within the bleeding disorders community. Visit
Letstalkmh.com and click Resources.
Brought to you by Sanofi
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Subscribe to The Final Summit Podcast
Amy and Patrick are joined by Believe Limited colleague and new BloodStream Podcast correspondent James Maple! Plus, Let’s Talk is back with a segment of suffering that features interviews with community members Dwayne Whitis and Heather Hogan, and a follow-up interview with Dr. Hanny Al-Samkari on the 2nd most common bleeding disorder that you don’t know about!
Presenting Sponsor: Takeda (bleedingdisorders.com)
Show Notes:
Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.
Learn more about HHT
Subscribe to BloodStream Podcast
Listen to the latest from BloodStream’s FLOW podcast
Listen in to Let’s Talk, a monthly segment with your host, Josh Bragg. Let’s Talk shares tips on
how to care for your own or someone you love’s mental health and strives to eliminate the
stigma associated with this discussion within the bleeding disorders community. Visit
Letstalkmh.com and click Resources.
Brought to you by Sanofi
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Subscribe to The Final Summit Podcast
There is a women’s movement a brewin’ and Patrick & Amy have the scoop! Special guest Ashley Gregory is here to tell us all about it! Plus, Amy has a diagnosis of her own to talk about, and Jessica brings us back to The Well for a segment on growth featuring community member, Michelle Conde.
Presenting Sponsor: Takeda (bleedingdisorders.com)
Episode Advertiser: CSL Behring (portraitsofprogress.com)
Learn more about FAIR! Contact ashley.gregory@hemofoundation.org.
Show Notes:
Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.
Subscribe to BloodStream Podcast
Listen to the latest from BloodStream’s FLOW podcast
To learn more about FAIR, Females Are Important to be Recognized, contact Ashley Gregory.
The Bloodstream Podcast is also brought to you in part by a new campaign from CSL Behring called Portraits of Progress. To learn more, check out www.PortraitsofProgress.com
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
There is a women’s movement a brewin’ and Patrick & Amy have the scoop! Special guest Ashley Gregory is here to tell us all about it! Plus, Amy has a diagnosis of her own to talk about, and Jessica brings us back to The Well for a segment on growth featuring community member, Michelle Conde.
Presenting Sponsor: Takeda (bleedingdisorders.com)
Episode Advertiser: CSL Behring (portraitsofprogress.com)
Learn more about FAIR! Contact ashley.gregory@hemofoundation.org.
Show Notes:
Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.
Subscribe to BloodStream Podcast
Listen to the latest from BloodStream’s FLOW podcast
To learn more about FAIR, Females Are Important to be Recognized, contact Ashley Gregory.
The Bloodstream Podcast is also brought to you in part by a new campaign from CSL Behring called Portraits of Progress. To learn more, check out www.PortraitsofProgress.com
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
BloodStream welcomes Greig Blamey, a physiotherapist from Winnipeg, Canada and the lead investigator and author of Sexual Issues in People with Haemophilia: Awareness and Strategies for Overcoming Communication Barriers (A fantastic interview!). Plus, Patrick learned something at his recent HTC visit and the latest Let’s Talk mental health segment, featuring Joshua Sterling Bragg, on growing, evolving, and taking baby steps.
Show Notes:
Subscribe to BloodStream Podcast
Sexual Issues in People with Haemophilia: Awareness and Strategies for Overcoming Communication Barriers: Click HERE
Listen in to Let’s Talk, a monthly segment with your host, Josh Bragg. Let’s Talk shares tips on
how to care for your own or someone you love’s mental health and strives to eliminate the
stigma associated with this discussion within the bleeding disorders community. Visit
Letstalkmh.com and click Resources.
Brought to you by Sanofi
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Comedy writer Dru Johnston and mountaineer Chris Bombardier join Patrick and Amy for a discussion about the Making of The Final Summit, BloodStream Media’s podcast exploring what it means to chase a dream, achieve a dream, and realize then that the work has only just begun. We’ll also discuss the Celebration of Life for Val Bias and hemophilia A gene therapy approval for Europe.
Show Notes:
Subscribe to BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Patrick is joined by dynamic duo, Dr. Kevin Kuo and Dr. Hanny Al-Samkari who share more about Alpha and Beta Thalassemia, a sister blood disorder to hemophilia. Plus, we’ll get an update on Patrick’s chronic pain & Amy’s writing as well as a brand new Let’s Talk segment on aging and changing.
Show Notes:
Let’s Talk is brought to you by Sanofi
Metal Heath Educational Resources
Visit Shareyourwhy.com to meet the Sanofi CoRe team and hear from them and members of the community about their story and passion for the hemophilia community.
Portraits of Progress
Subscribe to BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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Patrick and Amy are joined by three of the most prolific and committed rare disease podcasters out there: Effie Parks from Once Upon A Gene, Kyle Bryant from Two Disabled Dudes, and Bo Bigelow from Stronger Every Day. Those three titans behind the mic join us for a candid discussion about patient centricity, we touch on some recent news, FLOW’s Jessica Lauren Richmond is back with the latest installment of The Well.
Show Notes:
Subscribe to:
Once Upon a Gene
2DD
Stronger Everyday
Recent novel therapy news:
CSL Behring gene therapy makes comeback after hold for FDA priority review
BioMarin delays planned FDA filing for hemophilia gene therapy
FDA Grants Breakthrough Therapy Designation to BIVV001 for Hemophilia A Treatment
Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
The Bloodstream Podcast is brought to you in part by a new campaign from CSL Behring called Portraits of Progress. To learn more, check out www.PortraitsofProgress.com
Subscribe to BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Women with mild hemophilia, vWD, and gene therapy were topics of discussion at The World Federation of Hemophilia’s World Congress that took place earlier this month in Montreal, Canada and Patrick and Amy were there! Hear about it as well as planning for the summer and our latest Let’s Talk mental health segment led by Believe Limited’s Joshua Sterling Bragg on loss.
Show Notes:
Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
The Bloodstream Podcast is brought to you in part by a new educational gene therapy resource from CSL Behring called HemEvolution.
To learn more, check out www.HemEvolution.com
Subscribe to BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Patrick and Amy hosted a LIVE Journey to Joint Health panel at HFA with eight blood brothers who shared their experience participating in the HFA led physical fitness challenge and now you can listen in! You’ll also hear from HFA CEO Sharon Myers and Board Chair Allie Ritcey, and we’ll cap today’s episode off with our second installment of The Well, a holistic wellness segment led by FLOW podcast host Jessica Lauren Richmond.
Show Notes:
HFA Symposium 2022
Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
Segment Sponsored by Genentech: Visit https://www.hemlibra.com to learn more.
Subscribe to BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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Join Patrick and Amy for another LIVE episode from HFA Symposium where we have the pleasure of speaking with keynote speaker, Zander Masser. Zander’s father, Randy, lived with severe hemophilia B until he passed from AIDS-related illnesses in 2000 at the age of 52. Twenty years later, Zander unburied 10,000 slides from Randy’s career as a professional photographer and explores his process of exploring grief through creativity. Hear his incredible story right here on BloodStream.
Show Notes:
Learn more about Randy Masser
Unburying My Father, the book will be released on June 12, 2022. Learn more or pre-order HERE!
HFA Symposium 2022
Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
Subscribe to BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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Patrick and Amy are LIVE from HFA Symposium! Listen in to keynote speaker, Adar Cohen, as he shares how the strength of our communities relies on our willingness and our ability to have the big, complicated conversations in our work, in our families, and in our civic lives.We’ll also have a new Let’s Talk segment with Josh Bragg. A great episode about those “big conversations” we often avoid. Show Notes:
Learn more about Adar Cohen!
HFA Symposium 2022
Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
Subscribe to BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
In this mini episode, Patrick and Amy run through Believe & BloodStream presence at the Hemophilia Federation of America’s Symposium before speaking about some major April anniversaries and introducing the new season of BloodStream Media’s Pain Podcast! Show Notes: Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
Subscribe to BloodStream Podcast
HFA Symposium 2022
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Patrick spends time with advocacy leader and patient, Brian O’Mahony, about issues facing the community in Ireland and his updates on his experience as a person with hemophilia who’s been dosed with gene therapy. Amy speaks with Dr. Ben Samelson-Jones about the use of Twitter in hemophilia and we have a new segment! Listen in for the debut of a brand new monthly segment, The Well, featuring Jessica Lauren Richmond of BloodStream’s FLOW podcast. Show Notes:
Article from Hemophilia News Today: Ankle Joint Damage in Hemophilia Common, But Not Linked to Pain
Digital haemophilia: Insights into the use of social media for haemophilia care, research and advocacy
Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
Subscribe to BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Patrick and Amy welcome news producer and thalassemia advocate Nina Maria Baldalamenti to the show as well as blood brother and frequent flier of BloodStream, Luke Pembroke, who reveals he’s on the brink of leaving for, dare we say, an adventure of a lifetime (!!). They also discuss the recent MASAC meeting (Medical and Scientific Advisory Council of NHF), present the latest Let’s Talk mental health segment with Josh Bragg and play clips on novel therapies from the latest episode of Global Hemophilia Report. Show Notes:
Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
Let’s Talk Sponsor: Sanofi.
Visit LetsTalkMH.com for mental health resources
Subscribe to BloodStream Podcast
Global Hemophilia Report - new episode!
Haemcast Podcast w/ Luke Pembroke and PJL!
Max Feinstein on 2DD Podcast
MASAC Information
Learn more about Thalassemia!
Catch up on previous segments of Let’s Talk!
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Hear from Kristin Eilenberg of EE Minds about their state-of-the-art programs designed for parents who have children with medical conditions. With courses such as “I Am The Parent, Your New Normal, and Empowerment” and “Rules of the Road and Meaningful Consequences”, EE Minds is changing the way parents parent. Plus, HFA is back and a chat with Josh Bragg! A great episode! Show Notes:
Subscribe to BloodStream Podcast
Energizing & Empowering Minds
Living Beyond The Diagnosis
Testimonials
Program Overview
Learn and register for a program
Register for HFA Symposium
Joint Damage Seen in Hem A Patients With Milder Disease, Few Bleeds
Connect with BloodStream Media:
BloodStreamMedia.com
It’s Rare Disease Day so we’re honoring our caretakers with a special interview with Brendan Hayes, a hemophilia mom who has had the opportunity to work with other rare disease groups as a national advocate. We’ve got another Let’s Talk segment featuring Josh Bragg’s journey to finding joy. A feel good, can’t miss episode! Show Notes: Explore Rare Disease Day and Share Your Colors! Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.
Check Out Season One of Let’s Talk, a segment devoted to mental health in the bleeding disorder community.
Let’s Talk - a film by Believe Limited, made possisble by Sanofi
Find Resources at Mental Health Matters Too
Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Patrick and Amy welcome new FLOW co-host and lady bleeder, Sarah Watson AND community member, Jim Mueller, who shares some cool ideas about financial planning. We’ll also introduce our new podcast The Global Hemophilia Report with Dr. Donna DiMichele. Show Notes:
Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
Co-pay Accumulator Policies Hurt Patients. There’s a Simple Solution: Link
HR5801 - The Help Ensure Lower Patient Copays Act: Link
The Global Hemophilia Report: Link
Tribeca Communications: recruiting people who are 18 years and older with moderate to severe hemophilia A and caregivers of children ages 1-17 years old with hemophilia A (without active inhibitors) to be part of a market research survey. If you are interested in participating, please email George Poulakos at GJP@tribecacom.com.
Tribeca Communications: recruiting people who are 18 years and older with moderate to severe hemophilia B and caregivers of children ages 1-17 years old with hemophilia B (without active inhibitors) to be part of a market research survey. If you are interested in participating, please email George Poulakos at gjp@tribecacom.com.
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Dr. Guy Young is here to break down the latest data out of the BioMarin gene therapy clinical trial. We get a new Let’s Talk segment featuring Josh Bragg AND Patrick reveals a big secret. Don’t miss it! Show Notes: Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
BioMarin plans return to FDA with updated data on hemophilia gene therapy (BioPharmaDive): Link
BioMarin's hemophilia A gene therapy hits goal in phase 3, teeing up FDA filing despite durability doubts (Fierce Biotech): Link
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
On December 30th, 2021, longtime bleeding disorders and HIV/AIDS advocate and former National Hemophilia Foundation CEO Val Bias passed away suddenly at age 63. This special episode features audio from numerous interviews that Val gave to BloodStream Media and Believe Limited across the years; it’s Val’s life, in Val’s own words, set alongside personal reflections from hosts Amy Board and Patrick James Lynch. Show Notes: Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
Buffalo New Obituary
Val Bias, 63, crusader for better care for those with hemophilia and HIV/AIDS: LINK
World Federation of Hemophilia
WFH VP Medical Glenn Pierce pays tribute to Val Bias: LINK
National Hemophilia Foundation
NHF Mourns the Loss of Longtime CEO, Val Bias: LINK
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
We hear from Save One Life and the World Federation of Hemophilia on what to expect in 2022, as well as some gene therapy trial updates. Patrick and Amy speak about the loss of Val Bias and preview a special episode honoring his life.
Show Notes:
Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
What’s the end of the year without Top Ten lists? Patrick and Amy did their own spin on the end-of-year Top Ten lists and you can’t miss it! We list our favorite episodes across the BloodStream Media network during 2021 and hear Patrick’s top discoveries since becoming vegetarian. Show Notes:
Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
Top Ten BloodStream Media Episodes of 2021
- Cheat Codes | What Just Happened - Best of Sickle Cell Conferences, #FSCDR21: Link
- FLOW | What do hormones do?: Link
- BloodStream | Best of BloodStream @ BDC 2021: Link
- Cheat Codes | Impact Players on Third and Long: Santonio Holmes and Martenzie Johnson: Link
- The Pain Pod | “Pushing Through the Pain” Link
- Once Upon a Gene | How We Can Balance and Understand the Unique Struggles We Face with Caregiver Fatigue, Compassion Fatigue and Decision Fatigue with Counselor Rose Reif: : Link
- BloodStream: The Birth Story: Welcome Vivian Bea! Link
- FLOW | Men + Menstruation: Link
- BloodStream: Howlin' Rays, coffee's the new vitamins, and Two Disabled Dudes! Link
- BloodStream | Diversity, Equity, and Inclusivity in Bleeding Disorders w/ Connie Montgomery : Link
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Patrick and Amy welcome Dr. Len Valentino, CEO with The National Hemophilia Foundation and HFA CEO Sharon Meyers to give listeners a review of 2021 and lookahead to 2022. Show Notes:
Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
The National Hemophilia Foundation: Link
Hemophilia Federation of America: Link
Our Segment this month is made possible by Genentech
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Patrick and Amy welcome onto the show Connie Montgomery, a retired occupational therapist, active volunteer, and person living with Factor VII deficiency, who joins BloodStream contributor and social worker Alex Abreu Boria for an open conversation on issues and experiences related to diversity, equity, and inclusion in bleeding disorders. Show Notes:
Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
Patient informed consent article: Link
Pfizer and Sangamo’s gene therapy trial paused: Link
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Patrick and Amy are joined by hemophilia patients and advocates Laurence Woollard, Dakota Rosenfelt, and Richard Gorman to discuss their recently published article, Improving patient informed consent for haemophilia gene therapy: the case for change. Show Notes:
Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
Patient informed consent article: Link
Pfizer and Sangamo’s gene therapy trial paused: Link
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Wes Michael from Rare Patient Voice joins Amy and Patrick for a discussion about surveys and paid research opportunities in bleeding disorders before Josh Bragg returns with the latest installment of the Let’s Talk mental health segment. Show Notes:
PRESENTING SPONSOR: Takeda
LET’S TALK SEGMENT SPONSOR: Sanofi Genzyme
SEGMENT SPONSOR: Genentech
BLOODSTREAM MEDIA: All our stuff!
RARE PATIENT VOICE: Website
LET’S TALK SEGMENT: Website
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Hemophilia patient advocate and Haement Creative Director Luke Pembroke returns to BloodStream to discuss his gene therapy clinical trial experience and Mel Forrest, writer and host of The Pain Podcast joins to share her chronic pain learnings from Season 3 (out now!) as well as some of her journey in storytelling. Show Notes:
PRESENTING SPONSOR: Takeda - bleedingdisorders.com
SUBSCRIBE: BloodStream Podcast on Apple Podcasts
CHECK OUT: All BloodStream Stuff
FIND OUR HOSTS ON SOCIAL: @patrickjameslynch @boardo87
Episode Notes:
THE PAIN PODCAST: Season 3 - Now Live!
LUKE PEMBROKE: Twitter, Instagram
Connect with BloodStream Media:
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Amy and Patrick discuss how growing up with a chronic illness can lead to feeling “less than,” highlight recent articles on mild hemophilia and women in the community, and present the latest installment of Let’s Talk mental health with Joshua Sterling Bragg, featuring Dr. Emily Wheat.
Show Notes:
PRESENTING SPONSOR: Takeda
LET’S TALK SEGMENT SPONSOR: Sanofi Genzyme
SEGMENT SPONSOR: Genentech
BLOODSTREAM MEDIA: CHECK OUT all our stuff
LINKS FROM THIS EPISODE:
- Females Account for 1 in 5 Mild Hemophilia Cases at US Centers
- Syrians Claim First Case of Girl With Both Hemophilia A and C
Find our Hosts on Social: @patrickjameslynch @boardo87
Connect with BloodStream Media:
Find all of our bleeding disorders podcasts on
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Check out Believe Limited’s Other Work:
BloodFeed: bloodfeed.com
Bombardier Blood: bombardierblood.com
Hemophilia: The Musical: breakingthroughhemophilia.com
My Beautiful Stutter: mybeautifulstutter.com/
Stop The Bleeding!: stbhemo.com
Teen Impact Awards: teenimpactawards.com
The Science Fair: thesciencefair.org
During last month’s Bleeding Disorders Conference, Believe Limited’s Science Fair hosted a session that provided a brief overview of the state of science in bleeding disorders, featuring NHF CEO Len Valentino alongside hematologists and researchers Dr. Robert Sidonio and Dr. Jonathan Roberts. Audio provided courtesy of the National Hemophilia Foundation.
Show Notes:
PRESENTING SPONSOR: Takeda
SCIENCE FAIR SPONSOR: Spark Therapeutics
Register for NHF's State of the Science Research Summit
NHF Education on Rare Bleeding Disorders
Emicizumab PUPs and Nuwiq ITI Study
VISIT The Science Fair
SUBSCRIBE to BloodStream on Apple Podcasts
CHECK OUT all our stuff
Patrick and Amy are back LIVE bringing you the best of BloodStream at BDC! Listen in as they cycle through nine patient and caregiver guests catching a glimpse of those “hallway conversations” we all miss.
Show Notes:
PRESENTING SPONSOR: Takeda
EPISODE SPONSOR: MyFactorFam.com
SUBSCRIBE to BloodStream on Apple Podcasts
CHECK OUT all our stuff
Patrick and guest co-host Mel Forrest welcome on members of National Hemophilia Foundation's staff to preview the community's biggest annual meeting of the year.
Show Notes:
PRESENTING SPONSOR: Takeda
EPISODE SPONSOR: MyFactorFam.com
REGISTER for BDC: https://bit.ly/3jT9SdJ
CHECK out BDC Interactive program: https://bit.ly/3iJEcIJ
LISTEN to The Pain Podcast
SUBSCRIBE to BloodStream on Apple Podcasts
CHECK out all our stuff
Patrick and Amy are LIVE and joined by Alex Abreu Boria to chat about next month's Bleeding Disorders Conference, Emily Wheat to discuss the role of a clinical psychologist in the treatment center, Joshua Sterling Bragg with the latest Let's Talk mental health segment, and Max Feinstein shares his brand new song, "Dear Anxious." Show Notes:
PRESENTING SPONSOR: Takeda
SUBSCRIBE to BloodStream on Apple Podcasts
CHECK OUT all our stuff
Patrick and Amy catchup during the Lynch family’s east coast tour and discuss recent articles on California v Texas, shared decision making models, and safety related to AAV gene therapy.
Show Notes:
PRESENTING SPONSOR: Takeda
CONNECT with Genentech
SUBSCRIBE to BloodStream on Apple Podcasts
CHECK OUT all our stuff
NEW BloodStream Media Website
JD Supra Article - California v. Texas
Article on Shared Decision-Making
Gene Therapy Article
Patrick and Amy are LIVE and discuss some unfortunate lunchtime mishaps and new studies on coffee before Josh leads the latest Let's Talk mental health segment and Patrick leads a talk with Sean and Kyle, hosts of the Two Disabled Dudes Podcast.
Notes:
Presenting Sponsor: TAKEDA - bit.ly/TakedaBDsite
Let’s Talk Segment Sponsor: SANOFI GENZYME - http://bit.ly/LetsTalkMHBSP
CHECK OUT Two Disabled Dudes Podcast: https://bit.ly/3cPcM0z
READ The Health Benefits of Coffee: https://nyti.ms/3gGrl7J
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP
Patrick and Amy welcome on rare disease patient, advocate, and podcaster Avantika Shrivastava to hear her perspective on rare disease care and management in India.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
Patrick and Amy are live, in-studio, for the first BloodStream LIVE of the year! Join the hosts and a variety of special guests for segments on patient education, the return of in-person patient meetings, asking for help, and so much more- including an announcement about a major rare disease podcast joining BloodStream Media!
Notes:
Presenting Sponsor: TAKEDA - bit.ly/TakedaBDsite
Let’s Talk Segment Sponsor: SANOFI GENZYME - http://bit.ly/LetsTalkMHBSP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP
SUBSCRIBE to Once Upon A Gene Podcast: bit.ly/OUAGspot
SUBMIT to the BIG BLOODY TALENT SHOW: bit.ly/BigBloodyTalentShow
SIGNUP for our FIRST-EVER NEWSLETTER: bit.ly/NewslettterSignups
Patrick and Amy catch up on some recent community news then speak with leukemia survivor and bone marrow transplant recipient Bob Falkenberg as he’s set to kick off his 10th Lifeblood cycling ride to support Be The Match.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
BloodStream LIVE May 26th - Event link: http://bit.ly/BloodStreamIsBack
Bob’s Team Lifeblood: http://bihttps://bit.ly/3yaPj2U
NHF’s Community Voices in Research: http://bit.ly/CVRNHF
CSL and uniQure close agreement: http://bit.ly/CSLuni
Experimental SubQ Inhibitor Treatment: http://bit.ly/SubQinhib
Patrick and Amy speak to Kathy Raufi on the brink on International Thalassemia Day, get input from the Coalition for Hemophilia B on some recent news, and discuss how von willebrand factor may be key to helping treat clotting disorders, too!
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
International Thalassemia Day #ITD2021
To learn more about iron overload, treatments, comorbidities with Thalassemia, and more, visit:
Thalassemia Foundation of Canada:
https://bit.ly/33zlLOB
Cooley’s Anemia Foundation:
https://bit.ly/2RudLeX
Patients’ Stories:
https://bit.ly/2SvzLqe
Patrick and Amy are joined by Julie Kim, President of the Plasma-Derived Therapies Business Unit for Takeda, to discuss Takeda’s 5-year commitment to the WFH Humanitarian Aid Program. Then later in the show they’re joined by frequent contributor Alexa Abreu and her sister Juliemar - a former Teen Impact Honoree - to discuss the uncelebrated accomplishments of our youth and what supporting young people should actually look like.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
NOMINATIONS for the Teen Impact Awards: http://bit.ly/TIA2021bsp
TAKEDA joins WFH’s Humanitarian Aid Program: bit.ly/WFHTakeda2021
Patrick and Amy are joined by FLOW Podcast host Jessica Lauren Richmond to discuss assessing women’s health holistically and by Ruby Ball Foundation founder Ijeoma Azubuko to hear the harrowing story that led to her foundation’s innovative work. We also debut our new Let’s Talk mental health segment, featuring key moments from and expert insights into the Believe Limited documentary by the same name profiling mental health challenges in the bleeding disorders community.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
LET’S TALK SEGMENT SPONSOR: Sanofi Genzyme - http://bit.ly/LetsTalkMHBSP
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
FLOW Podcast: http://bit.ly/FLOWpod
Ruby Ball Foundation: http://bit.ly/RubyBallIG
Silent Podcast: http://bit.ly/SilentPodcastRBF
Amy and Patrick speak with students at Brown University who’ve been working with Save One Life in honor of World Hemophilia Day, and USP7 Foundation Chairman Bo Bigelow joins to discuss important news in the USP7 world on the heels of Hao-Fountain Syndrome Awareness Day.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
Breaking Through: https://bit.ly/3smEGpN
Teen Impact Awards: https://bit.ly/2Q9zXue
Help Save One Life: https://bit.ly/3elfs6f
Stronger Every Day Podcast: https://bit.ly/3tmui2v
USP7 Foundation: https://bit.ly/2Q6oEmH
DISORDER Rare Disease Film Festival: https://bit.ly/3gcv7qK
Amy and Patrick review MASAC’s new recommendations for women with bleeding disorders, provide an important update on a recent clinical trial investigation, and discuss bullying during COVID. Then filmmaker Ryan Gielen joins to talk about his new documentary, My Beautiful Stutter, now streaming on discovery+.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
MY BEAUTIFUL STUTTER: http://bit.ly/MBSLetMeSpeak
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
American Rescue Plan (ARP) info from NHF: http://bit.ly/NHFARP2021
Gene Therapy Clinical Trial Investigation: http://bit.ly/GTinvestigation2021
MASAC recommendations for women: http://bit.ly/MASACwomen
Cyberbullying in India: http://bit.ly/CyberIndia2021
Lunula Nutrition’s Delisa O’Brien joins Amy and Patrick to discuss our relationship to exercise and curative therapies. Then, Laurence Woollard joins to discuss his recent articles, one on adolescent transitional healthcare, the other on COVID-19’s impacting patient education through social media.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
Check out how to customize your exercise routine with Takeda at http://bit.ly/LivingHealthyBD
Delisa O’Brien - Lunula Nutrition Consulting
http://bit.ly/DelisaOnNutrition
http://bit.ly/DelisaOnTwitter
Laurence Woollard - On The Pulse Consultancy
http://bit.ly/LaurenceInPEN
http://bit.ly/LaurenceInRareRev
http://bit.ly/LaurenceOnTwitter
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
Long-time physician and advocate of our community, NHF CEO, Dr. Len Valentino shares what this month of awareness means to him and what we can expect from the National Hemophilia Foundation in the months and years to come. We hope you felt celebrated and inspired during this month of awareness. From all of us at Bloodstream, we loved being with you during Bleeding Disorders Awareness Month!
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
Today we are traveling to the Caribbean island of the Dominican Republic with our guest, Dr. Ana Yolanda Santos, to celebrate World Hemophilia Day. To honor the language of the people of the Dominican Republic, the conversation in this episode is completely in Spanish. Dr. Ana Yolanda shares her migration story to the United States, what life is like in the DR for people with bleeding disorders, and what we can learn from the Dominican people to enhance the quality of life for the bleeding disorders community in the United States.
To connect with Dr. Ana Yolanda Santos: dra.yolandasbj@gmail.com
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
In 2017, Puerto Rico made international headlines as Hurricane Irma and Maria hit the island, leaving Puerto Ricans without running water, electricity, and even shelter. Bleeding disorder community members were not exempt from this reality and faced unprecedented barriers to treatment and care. While still recovering from natural disasters, the island also endures challenges from the global pandemic that has touched the world. Anthony Llanes, Executive Director of the Hemophilia Chapter of Puerto Rico, shares with us the challenges faced by the bleeding disorders community, the chapter’s commitment to providing for families in need, and the resilience of the people of Puerto Rico.
Find the chapter’s website here: https://hemofiliapr.org/english/what-we-do/initiatives-campaigns.html
To get in contact with Anthony: hemophilia.aph@gmail.com
To donate click here
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
Back from paternity leave, Patrick rejoins Amy as co-host. They debrief last week’s emotional episode before welcoming social worker and regular contributor Alexa Abreu on to discuss how each of us relates to food and the idea of dieting. Then community member Kevin Leurquin joins to share his journey overcoming serious mobility challenges.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
Sponsored by Takeda. Learn how healthy eating can help your joints and how to better manage your bleeding disorder with Takeda at, www.bleedingdisorders.com/living-well.
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
FIND KEVIN on Instagram: http://bit.ly/KevinLIG
It’s the Final Thursday of Bleeding Disorders Awareness Month, and that means Josh is back for his final moment for mental health. Today’s subject is Trauma, and he is joined as usual by Debbie De La Riva, who gives some expert opinions on where Trauma comes from, how it presents in the bleeding disorders community, and what we can do after experiencing a traumatic event. Let’s have a moment.
Mental Health First Aid Class:https://www.mentalhealthfirstaid.org/
Mental Health America Surveys:https://screening.mhanational.org/screening-tools/
Free Support Groups Depression BiPolar Support Alliance:https://www.dbsalliance.org/
New Harbinger Publications:https://www.newharbinger.com/
Join us for an interview with Dr. Glenn Pierce who gives a terrific overview on the purpose and value of MASAC, the Medical and Scientific Advisory Council. MASAC was created by the National Hemophilia Foundation in 1954 to issue recommendations and advisories on treatment, research and other general health concerns for the bleeding disorders community. This committee plays a vital role in treatment, advocacy, and research into our communities. Join us to learn more about how MASAC can affect your life with a bleeding disorder.
Program Notes:
Learn more about MASAC here: https://www.hemophilia.org/who-we-are/our-team/masac
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
Join a candid roundtable with Chapter leaders, Rich Pezzillo, Sue Martin, and Maureen Grace as they share what makes our community so unique and what keeps them up at night.
Let’s celebrate Bleeding Disorders Awareness Month by lifting up our leaders who work tirelessly for the benefit of our community.
Program Notes:
Find your local chapter here: https://www.hemophilia.org/community-resources/resources-near-you/nhf-chapters
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
FLOW’s Christie & Jessica speak with Dana Francis, Social Worker at University of California San Francisco, who specializes in supporting adults with bleeding disorders, as well as their partners and other family members.
What can individuals do to support themselves through the grieving process? Collective trauma / collective PTSD, caregiver / carrier grief, and transitional grief are discussed in today’s special episode of Bloodstream. Mental health resources are available at letstalkmh.com/resources
Hear our hosts on FLOW - straight talk about extreme periods, wherever you get your podcasts. March is Bleeding Disorders Awareness Month and The Bloodstream Podcast is bringing you short daily episodes. Find out more about all of Bloodstream Media shows at www.bloodstreammedia.com
Program Notes:
Thank you, Dana!
Let’s Talk, the mental health documentary featuring Dana Francois:
https://www.believeltd.com/project-lets-talk-mental-health
https://letstalkmh.com/resources
Find today’s Hosts’ on Instagram: @jessicalaurenrichmond @howtotalktoyourdoctor
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
This special episode of BloodStream features our newest team member, Vivian Bea Lynch! Patrick and Natalie are back to share Vivian’s birth story. While we are thrilled to share that Vivian Bea is safely in the world, her journey in getting here was unexpected, complicated, and, frankly, scary for her parents. Patrick and Natalie are health advocates who believe that sharing their and Vivian’s story will not only provide a means of processing for them, both can also amplify the normalization and awareness for complicated birth stories. They believe in the power of storytelling for good and for healing ...and this is Vivian’s story.
Program Notes:
PRESENTING SPONSOR: Takeda
LINKS from Nat: https://www.medpagetoday.com/meetingcoverage/acog/72600
CHECK OUT ALL OUR SHOWS
It’s the third Thursday of Bleeding Disorders Awareness Month, and that means Josh is back to take a moment for mental health. Today’s subject is imposter syndrome, and he is joined as usual by Debbie De La Riva, who gives some expert opinions on where imposter syndrome comes from, how it presents in the bleeding disorders community, and what we can do when we are feeling like an imposter. Let’s have a moment.
Mental Health First Aid Class: https://www.mentalhealthfirstaid.org/
Mental Health America Surveys: https://screening.mhanational.org/screening-tools/
Free Support Groups Depression BiPolar Support Alliance: https://www.dbsalliance.org/
New Harbinger Publications: https://www.newharbinger.com/
Following our conversation on Diversity, Equity and Inclusion earlier this year, Kimberly Ramseur dives deeper into the experiences of people of color living with a bleeding disorder in the United States. This episode is the beginning of more conversations to highlight racial disparities and inequities within the American healthcare system. Black and Brown folk, we see you; we hear you.
Find Kimberly on linkedin! https://www.linkedin.com/in/kimberly-ramseur-jd-mph-07783994/
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
Mason Bobro shares his experience as a transgender man with a bleeding disorder, including his views on preferred pronouns, gender dysmorphia, monthly periods, and safe spaces for LGBTQ+ patients.
Hosted by Drama Del Rosario
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
Mel Forrest, host of The Pain Pod, is joined by guest Jeff Johnson to discuss what it means to be a blood brother and how it’s changed over the years.
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
Singer, songwriter, and community member Max Feinstein shares the recent journey with his new record, Redefine. Max hopes to do his part to normalize chronic conditions and influence those around him to view those who live with them through a more compassionate lens through his art. Listen in to hear his compelling story and see how you can be involved in Max’s work! We’ll also hear more about the Better You Know campaign - a great episode this week!
Program Notes:
Better You Know Campaign: https://www.cdc.gov/ncbddd/blooddisorders/women/materials/index.html
Women with Bleeding Disorders Risk Assessment Tool: https://www.betteryouknow.org/i-want-to-know-for-women
Breaking Through: www.breakingthroughhemophilia.org
Nominate a Teen Today!: www.teenimpactawards.org
Support Max Feinstein here: https://fundraising.fracturedatlas.org/redefine-hemophilia
The Speakpipe Link: givemeanh.com
Listen to Max here: https://maxfeinstein.bandcamp.com/
It’s the second Thursday of Bleeding Disorders Awareness Month, and that means Josh is back to take a moment for mental health. Today’s word is depression, and he is joined as usual by Debbie De La Riva, who gives some expert advice on how to manage depression, how to talk to someone who is feeling depressed or suicidal, and where to find valuable mental health resources.
National Suicide Prevention Lifeline
800-273-8255
https://suicidepreventionlifeline.org/
Mental Health First Aid Class: https://www.mentalhealthfirstaid.org/
Mental Health America Surveys: https://screening.mhanational.org/screening-tools/
Free Support Groups Depression BiPolar Support Alliance: https://www.dbsalliance.org/
New Harbinger Publications: https://www.newharbinger.com/
The no BS Guide for Men dealing with Depression: https://www.newharbinger.com/how-stop-feeling-so-damn-depressed
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
Mel Forrest, host of The Pain Pod, is joined by guest Rebecca Hill to discuss HIV and HepC, the community today and Blood of the Paladin for National Women and Girls HIV Awareness Day.
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
Gayathri Rajaram talks about being the mother of Swedha Rajaram, a teenager with hemophilia. She shares her first experiences finding out about her daughter’s bleeding disorder, plus her family’s love for Indian classical dance.
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
FLOW’s Christie & Jessica speak with community member Sara Jestrab on today’s special daily dose of Bloodstream Media! Sara gives Christie & Jessica wonderful advice in honor of International Women’s Day.
Listen to the next episode of FLOW - straight talk about extreme periods on Thursday March 11th, wherever you get your podcasts!
March is Bleeding Disorders Awareness Month and The Bloodstream Podcast is bringing you short daily episodes. Find out more about all of Bloodstream Media shows at www.bloodstreammedia.com
Program Notes:
Thank you Sara!
Listen to FLOW - monthly episodes : )
Find our Hosts’ on Instagram: @jessicalaurenrichmond @howtotalktoyourdoctor
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
We introduce Doug Kerr to the community! Doug is the chief medical officer at Generation Bio, the company investigating non-viral gene therapy. Listen in to learn more about this fascinating science AND Jessica Richmond, co-host of FLOW, will join us to share a preview of her conversation with Dr. Paula James, hematologist, and founder of Let’s Talk Period during the March FLOW episode. A great listen!
Program Notes:
Check out Generation Bio: https://generationbio.com/
Subscribe/listen to FLOW, straight talk about extreme periods: https://www.bloodstreammedia.com/shows/flow
Let’s Talk Period: https://letstalkperiod.ca/
Follow Amy on Instagram
Follow Jessica on Instagram
During Bleeding Disorders Awareness Month, Thursdays are all about Mental Health. Join BloodStream producer and Creative Director at Believe Limited Joshua Sterling Bragg as he takes a moment for isolation. And it wouldn’t really be a mental health moment without our dear friend Debbie De La Riva to guide us through. Happy Thursday.
Mental Health Resources:
Workbooks: https://www.newharbinger.com/
Debbie’s Website: MentalHealthMatterstoo.com
NHF’s Steps for Living: https://stepsforliving.hemophilia.org/
HFA’s Learning Central: https://www.hemophiliafed.org/the-institute/
Let’s Talk - Mental Health: https://letstalkmh.com/resources
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
von Willebrand’s disease is the most common bleeding disorder, but did you know it still remains mostly a mystery? Listen in with Patrick as he provides a great overview on vWD, the tricky diagnosis process, the science behind it, and treatment options for those affected. Bleeding Disorders Awareness Month celebrates our fellow vWD bleeders too! Check it out to learn more!
Program Notes:
All About VWD from NHF: https://www.hemophilia.org/bleeding-disorders-a-z/types/von-willebrand-disease
CDC on vWD: https://www.cdc.gov/ncbddd/vwd/
Newly released vWD Guidelines: https://www.hematology.org/education/clinicians/guidelines-and-quality-care/clinical-practice-guidelines/von-willebrand-disease
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
Do you want to know the basics of hemophilia, or do you have a friend or family member that could use an overview? Bloodstream has you covered! Join us for this special episode, in celebration of Bleeding Disorders Awareness Month, as Patrick gives us the basics on Hemophilia A and B, treatment history, and HTC’s.
Program Notes:
Brush up on your Hemophilia Skills with NHF: https://www.hemophilia.org/bleeding-disorders-a-z
CDC on Hemophilia: https://www.cdc.gov/ncbddd/hemophilia/
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
To celebrate Bleeding Disorders Awareness Month, BloodStream is releasing daily episodes full of stories, history, and the people that make our community special. Start here with our first special episode as Patrick gives us the history behind Bleeding Disorders Awareness Month and the advocacy work it took, over decades, to become a reality.
Program Notes:
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
We Show Our Stripes for Rare Disease Day by welcoming NHF Education Specialist, Teen Impact Awards Host, and all-around wonderful advocate, Nikole Scappe to discuss her new book for rare bleeding disorders, Super Seven! Also, Amy shares a press release from NHF, WFH, and EHC on the recent Fitusiran clinical trial updates. A can’t miss episode of BloodStream!
Program Notes:
Register for the Super Seven Launch Party: https://www.hemophilia.org/events/nhf-book-launch-party
Fitusiran Press Release: https://www.hemophilia.org/news/sanofi-revises-fitusiran-dosing-regimen-to-mitigate-risk-of-vascular-thrombosis
Show Your Stripes For Rare Disease Day with NORD: https://rarediseases.org/rare-disease-day/
Amy and producer, Greg, share what Bloodstream has in store for Bleeding Disorders Awareness Month and Corey MacGregor, from Tremeau Pharmaceuticals, stops by to share her personal journey with chronic pain and why The Pain Pod was an opportunity she was passionate about.
SUBSCRIBE and listen to The Pain Podcast
Patrick and Amy discuss some of the topics presented during #EAHAD2021’s Virtual Conference before Amy’s joined by FLOW host Jessica Richmond for an interview with pediatric hematologist/oncologist Dr. Angela Weyand, aka the “Shematologist!”
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
CHECK OUT ALL OUR SHOWS: http://bit.ly/AllBloodStreamStuff
#EAHAD2021 on-demand: http://bit.ly/EAHAD2021
DR ANGELA WEYAND on Twitter: http://bit.ly/Shematologist
Patrick and Amy are joined by Effie Parks from the Once Upon A Gene podcast and Mel Forrest from Season 2 of The Pain Podcast! They also touch on recent bleeding disorders news and preview next week’s exciting expert guest!
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
CHECK OUT ALL OUR SHOWS: http://bit.ly/AllBloodStreamStuff
ONCE UPON A GENE PODCAST: http://bit.ly/EffiesShow
PAIN PODCAST: http://bit.ly/PainPodS2
Patrick and Amy are joined by Save One Life board member Natalie Lynch to discuss the organization’s focus to start the year as well as to share updates from her pregnancy journey! The three also discuss recently published non-viral gene therapy data and welcome on blood brother and musician Tamar Mitchell.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SAVE One Life: http://bit.ly/S1L2021
NON-VIRAL Gene Therapy: http://bit.ly/GenBio2021
TAMAR Mitchell IG: http://bit.ly/TamarMitchellIG
TAMAR Mitchell YT: http://bit.ly/TamarMitchellYT
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy discuss a recently published article by clinicians urging colleagues to educate their patients via social media. Then, our hosts bring on Brian O’Mahony to discuss his gene therapy clinical trial experience, his take on recent community news, and how the Irish Haemophilia Society has fared through COVID19.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
BRIAN on Twitter: http://bit.ly/BOMtwitter
TWITTER changing hematology: http://bit.ly/TwitterASH21
MEN born w hemophilia on gene therapy: http://bit.ly/RobustInquiry
GENE therapy trial placed on hold: http://bit.ly/GTtrialHold
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy discuss the long-awaited Von Willebrand Disease (vWD) guidelines published in the medical journal, Blood; provide an exciting update on a recent “Believe 19” guest, and speak to Camille Proctor, founder of The Color Of Autism Foundation.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
vWD Clinical Guidelines: http://bit.ly/vWDguidelines
FLOW podcast: http://bit.ly/FLOWBSM
PHILLY Famous podcast: http://bit.ly/PhillyFamousPodcast
COLOR of Autism Foundation: http://bit.ly/ColorOfAutism
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
#hemophilia #vonwillebranddisease #vwd #autism #podcast
Patrick and Amy review NHF’s FAQs regarding the COVID-19 vaccine’s safety for people with bleeding disorders, discuss recent healthcare legislative victories, and welcome Christie VanHorne and Jessica Richmond, hosts of BloodStream Media’s newest show full of straight talk about extreme bleeding: FLOW.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
FLOW podcast: http://bit.ly/FLOWBSM
CHRISTINE VanHorne on LinkedIn: http://bit.ly/CVHonLI
JESSICA Richmond on LinkedIn: http://bit.ly/JLRonLI
NEHA Fund for Max: http://bit.ly/nehamemorial
WASHINGTON Days registration: http://bit.ly/DCDays2021
COVID-19 Vaccine FAQs from NHF: http://bit.ly/COVIDvaccineNHF
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy kick off the new year with health equity specialist and community member Alexa Abreu to discuss the role diversity and inclusion plays in achieving health equity.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
ALEX on LinkedIn: http://bit.ly/AlexaOnLI
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy are joined by acclaimed pediatric hematologist and researcher Dr. Robert Sidonio for his take on the state of bleeding disorders as we close out this most unusual year. Happy Holidays!
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
FLOW, a BloodStream show for women - http://bit.ly/BSMFlow
DHAMMA (Vipassana) - http://bit.ly/DhammaBSM
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy are joined by National Hemophilia Foundation’s (NHF) VP of Public Policy Nathan Schaefer and Senior Manager of Government Relations Bill Robie to discuss key differences between state and federal advocacy, unique challenges to state-level advocacy, and how NHF’s State Based Advocacy Coalitions (SBAC) program assists chapters with state advocacy.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
NHF’s State Based Advocacy Coalitions (SBAC) Program: bit.ly/NHFSBAC
HERTZ on Cheat Codes: bit.ly/cheatcodespod
PRESTON on Journeys: bit.ly/BloodStreamJourneys
GENE THERAPY article: bit.ly/GTfactor
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy are joined by hemophilia and sickle cell expert Dr. Michael Callaghan who provides major takeaways from #ASH20. They also discuss actor Amanda Fuller’s disclosing her son’s hemophilia and the Irish Haemophilia Society’s CEO Brian O Mahony disclosing his enrollment in a gene therapy clinical trial.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
AMANDA FULLER’s IG post: bit.ly/AFullerHemB
PEOPLE Magazine story: bit.ly/AFullerPeople
DIVERSITY & Inclusivity in research: bit.ly/BMSDICT
BRIAN O MAHONY’s gene therapy experience: bit.ly/BrianGThemB
IRISH TIMES story: bit.ly/ITFunCure
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy discuss the importance of Giving Tuesday, the significance of #ASH20 (American Society of Hematology’s Annual Meeting), and they speak with a young man named Zachary who recently made an incredible commitment to Save One Life.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SUPPORT Save One Life: https://bit.ly/S1L2020
S1L SCHOLARSHIP Program - Philippines: https://bit.ly/S1LScholarshipPh
WORLD AIDS Day w/ Jeanne White-Ginder: https://bit.ly/JeanneWAD2020
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
Jeanne joins Patrick for a special World AIDS Day interview to discuss the current state of HIV/AIDS, the impact of the Ryan White Care Act 30 years after the bill’s passage, her experience through COVID, and much more!
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
The BloodStream team shares gratitude, stories, and bizarre moments from Thanksgivings past, then Philadelphia Youth Basketball CEO Kenny Holdsman joins for a Believe 19 interview!
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SEGMENT SPONSOR: Genentech - bit.ly/BloodlessBattle
TWITCH Rivals: bit.ly/2ZXZRTx
PHILADELPHIA Youth Basketball: bit.ly/PYBBSP20
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
Natalie joins Patrick and Amy to discuss how coronavirus is impacting holiday plans, the Affordable Care Act’s Open Enrollment period- closing December 15th- and actor Damian Washington joins to tell us about his multiple sclerosis YouTube channel NoStressMS and much more!
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
DAMIAN WASHINGTON’s website: https://bit.ly/DWNoStress
ORDER a free BloodFeed! Calendar: https://bit.ly/BloodFeedCalendar
NHF’s Insurance Toolkit: https://bit.ly/32MufSs
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
Policy experts Johanna Gray, a principal lobbyist representing the National Hemophilia Foundation (NHF), and Nathan Schaefer, NHF’s Vice President of Public Policy, join Amy and Patrick to discuss what the election results mean for bleeding disorders advocacy going forward. Plus, we pay tribute to beloved community advocate Donald “Ziggy” Douglas, who passed away suddenly earlier this week.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
LISTEN to BloodStream Journeys - https://bit.ly/BSJourneys
ORDER a free BloodFeed! Calendar: https://bit.ly/BloodFeedCalendar
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
Patrick and Amy discuss ICER’s recently published Evidence Report on Therapies for Hemophilia A as well as NHF’s Virtual Insurance and Reimbursement Conference. Then Amy interviews Nourbese Flint, the Policy Director for Black Women For Wellness, and we hear from the Assistant Secretary for Health, ADM Brett Giroir.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
ICER’S EVIDENCE REPORT: http://bit.ly/ICERHemA2020
NHF’S INSURANCE CONFERENCE: http://bit.ly/InsurReimburse20
BLACK WOMEN FOR WELLNESS: http://bit.ly/bwwlaBSP
CHEAT CODES PODCAST: http://bit.ly/CheatCodesPod
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
#hemophilia #ICER #healthinsurance #blackwomenforwellness #bleedingdisorders #bloodstreampod
In this Mischief Night 2020 episode, Patrick and Amy are joined by Haunting Season creator and host Joshua Sterling Bragg to escape the world as we know it for a quick trip into the paranormal and unexplainable! That, plus an interview with a representative of the high school activist group Swab4USA.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
HAUNTING SEASON: http://bit.ly/HSBSP20
SWAB 4 USA: http://bit.ly/Swab4USA
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
Patrick, Amy, and Natalie share some announcements before Kollet Kouliaos, the National Hemophilia Foundation's Senior Director of Payer Relations, joins to discuss some recent and encouraging survey results regarding copays and out-of-pocket costs, then fresh off the Appalachian Trail, teen adventurer William Addison joins to tell us about his 2,200 mile hike benefitting Save One Life!
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SEGMENT SPONSOR: Genentech - https://bit.ly/2FZ7K3P
Check out Twitch Rivals: https://bit.ly/2ZXZRTx
Survey Results on Copay Assistance: http://bit.ly/CoPaySurvey
SOBO for Save One Life: http://bit.ly/SOBO4SOL
WFH’s new President, Caesar Garrido: http://bit.ly/WFHCesar
Check out the new podcast, Haunting Season: http://bit.ly/HSBSP20
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
Patrick and Amy discuss the recently published, “100 Days Agenda: A Patient-First Blueprint” and are then joined by National Hemophilia Foundation’s Elizabeth Molnar to talk about the Unite For Bleeding Disorders walks!
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
100 Days Agenda: A Patient-First Blueprint: http://bit.ly/100DaysPatientsFirst
NHF’s Blue Sky Initiative: http://bit.ly/NHFBlue2020
Unite For Bleeding Disorders: http://bit.ly/UniteBD2020
Casting for Season 2 of The Pain Podcast - http://bit.ly/PainPodCasting
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
Patrick and Amy discuss social media’s impact on mental health before Mental Health Matters Too founder Debbie de la Riva joins to talk about mental health awareness, the questions she’s most commonly asked, the shifting role of telehealth, and the World Mental Health Day screening of the film Let’s Talk.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
REGISTER for the Rare Impact Awards - bit.ly/NORDRIA20
RSVP for World Mental Health Day Let’s Talk Screening - bit.ly/LetsTalkMHEvent
CASTING for Season 2 of The Pain Podcast - http://bit.ly/PainPodCasting
Mental Health Resources***:
VISIT Mental Health Matters Too for resources and links - http://bit.ly/MHMT2020
GET INVOLVED with National Alliance on Mental Illness - https://bit.ly/3jHlQ9i
LEARN MORE about black mental health resources - https://bit.ly/3nzwtgq
GO TO Mental Health Coalition - https://bit.ly/3iMEhIe
GET Cerebral - https://bit.ly/34CCPDk
HEAD to Better Help - https://bit.ly/34T4Vuj
* Believe Limited and Mental Health Matters Too are informing others of the existence of these services, but we are not endorsing any particular service..
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
The Rare Impact Awards, hosted by the National Organization for Rare Disorders (NORD), take place on Friday October 9th at 7pmEST and will honor music legend Peter Frampton, Ohio Senator Sherrod Brown, and our very own Patrick James Lynch (amongst others)! NORD’s Director of Strategic Planning and Project Development Lisa Sarfaty joins to discuss the event, then Germantown Academy’s legendary basketball coach Jim Fenerty joins to talk about his four-decade long coaching career, his diagnosis, and the rare blood cancer awareness campaign he’s joined.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
REGISTER (free) for the Rare Impact Awards - bit.ly/NORDRIA20
VOICES of MPN - bit.ly/VMPN20
VOTE! Vote.org - bit.ly/VoteOrg20
VOTE! WhenWeAllVote - bit.ly/BSPWWAV
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
Self-infuse from anywhere, advocacy wins in Texas, and what the death of Supreme Court Justice Ruth Bader Ginsburg could mean for the future of the Affordable Care Act (ACA) are all topics on today’s episode, plus, an interview with sickle cell and hemophilia expert hematologist Dr. Michael Callaghan, and a reading of a recently published article challenging the scrutiny of gene therapy clinical trials.
Presenting Sponsor: Takeda
Segment Sponsor: Genentech
NHF’s Blue Sky Initiative
Stop The Bleeding!’s Self-Infusion Episode
Aggregate of articles on Supreme Court vacancy.
SUBSCRIBE to BloodStream on Apple Podcasts!
LIKE BloodStream on Facebook!
WATCH BloodStream on YouTube!
Roy Ginder, the husband of notable AIDS and hemophilia advocate Jeanne White-Ginder, passed away early Wednesday morning. We pay tribute to Roy and share moving audio from a 2017 interview he gave to Patrick about the love of his life, Jeanne White.
Presenting Sponsor: Takeda
Fundraiser to support Jeanne White-Ginder
SUBSCRIBE to BloodStream on Apple Podcasts!
LIKE BloodStream on Facebook!
WATCH BloodStream on YouTube!
The Disorder Channel and DISORDER: Rare Disease Film Festival co-founder and rare disease parent Bo Bigelow joins BloodStream to discuss a recent article on the parents who are navigating the “wilderness” of rare genetic disease and to preview The Disorder Channel’s work at the upcoming Global Genes Patient (un)Summit!
Presenting Sponsor: Takeda
The Wilderness of Rare Genetic Disease and the Parents Navigating It
The Disorder Channel & Rare Disease Film Festival
Global Genes LIVE! A RARE Patient Advocacy (un)Summit!
Bo’s Stronger Everyday Podcast
Wheels for The World with Save One Life: Sign up today!
SUBSCRIBE to BloodStream on Apple Podcasts!
LIKE BloodStream on Facebook!
WATCH BloodStream on YouTube!
Amy introduces The Believe 19, a new segment with an interview with Rue Mapp, founder and CEO of Outdoor Afro. Outdoor Afro is a national organization celebrating and inspiring Black connections and leadership in nature. We’ll hear what their work is all about! Also, Patrick and Natalie share their excitement to participate in Save One Life’s annual fundraiser, Wheels for The World. Listen in to celebrate giving back and learn more about different ways to contribute to the good work being done in our communities!
Presenting Sponsor: Takeda
Learn More about Outdoor Afro: Outdoor Afro Website
Sign up for Wheels for the World: Save One Life
Listen to the It’s in the Gene’s Podcast!: Gene Therapy Podcast
SUBSCRIBE to BloodStream on Apple Podcasts!
LIKE BloodStream on Facebook!
WATCH BloodStream on YouTube!
We breakdown and react to a recent article on the role of child-abuse pediatricians and some of the dreadful outcomes that’ve come from the creation of this well-intended specialty. Then NHF board member and blood brother John Faria joins Patrick to discuss his role in the recently launched HemeWork program.
Presenting Sponsor: Takeda
Segment Sponsor: Genentech
Article: When the Misdiagnosis Is Child Abuse
The Marshall Project
HemeWork: Community Stories
SUBSCRIBE to BloodStream on Apple Podcasts!
LIKE BloodStream on Facebook!
WATCH BloodStream on YouTube!
To the surprise of many, on August 19th the US Food and Drug Administration denied the first application for a one-time gene therapy for hemophilia A. Patrick and Amy process this major news then share soundbites from their conversations with doctors Valentino, Quon, Young, and Wang during #NHF2020's Science Fair about gene therapy, emicizumab, and novel therapies.
Presenting Sponsor: Takeda
Response to FDA's Actions: HFA Statement The Science Fair is made possible by Spark Therapeutics
Bombardier Blood is now available worldwide! On release day, Patrick shares some "final thoughts" on the project, then turns the show over to Liz Manashil and Alrik Bursell's interview of him about the film for the Making Movies Is Hard podcast!
Presenting Sponsor: Takeda
Bombardier Blood: Available now!
Bombardier Blood Q&A w/ Anthony Rapp: More info!
Making Movies Is Hard w/ Liz Manashil and Alrik Bursell: Subscribe!
Patrick, Natalie, and Amy circle up to share highlights and personal takeaways from the National Hemophilia Foundation’s Virtual Bleeding Disorders Conference, which took place August 1st-8th via hemophilia.org. Listen in as the hosts recap some critical sessions, relive their favorite experiences, and share personal takeaways from #NHF2020!
Presenting Sponsor: Takeda
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With Believe Limited's Zoom(sical) about bleeding disorders only days from launch, director Katharine Lerner, musical director Paul Russell, and producer Jessica Lauren Richmond join Amy and Patrick for a candid conversation about how theater has changed their lives!
Presenting Sponsor: Takeda
Episode Sponsor: Genentech. Visit their new website: GenentechHemophilia.com
Watch Hemophilia: The Zoomsical!
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Does von Willebrand factor have something to do with COVID? What’s NHF’s virtual BDC all about? And are Natalie and Patrick pregnant?! (Spoiler: YES!) All this plus we welcome Amy Board and interview Nikole Scappe!
Presenting Sponsor: Takeda
NHF’s Virtual Bleeding Disorders Conference: Interactive Program
COVID-19 & Von Willebrand Factor: Article
SOBO 4 Save One Life: William Addision’ Appalachian Trail Fundraiser!
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The Flagship! Natalie and Patrick discuss the era of "virtual everything," how COVID's put remote chronic disease management in the spotlight, and Jason Schiffman (MD, MA, MBA), the Founder and Director of UCLA's Dual Diagnosis Program, joins for the interview to discuss the relationship between anxiety, depression, and addiction. Plus, Natalie and Patrick reflect on what's been a historic time of activism and civil unrest.
Presenting Sponsor: Takeda
Like Segment Sponsor: Genentech
Like Segment: Maintaining Chronic Disease Management During COVID
COVID Financial Resources from NHF
COVID Financial Resources from HFA
Facts on Racial Injustice from DoSomething.org
Showing Up For Racial Justice
Camden Center / Dr. Jason Schiffman
UCLA Dual Diagnosis / Dr. Jason Schiffman
Racism in America: A BloodStream Media Special
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Patrick speaks with Connie R. Faltynek, biochemist and author of Pain: Why Do We Continue to Suffer? about why treatment for pain is so far behind, the various forces contributing to pain, and more!
Pain: Why Do We Continue to Suffer?
BloodStreamMedia.com
BleedingDisorders.com (thanks, Takeda!)
BloodStream Media hosts Ahmar Zaidi and Patrick James Lynch are joined by guests Phillip Okwo and André Marcel Harris for a discussion on race, violence, and healthcare in America. Take Action Right Now: https://8cantwait.org/ Guests: Phillip Okwo; André Marcel Harris Subscribe to The BloodStream Podcast
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Patrick is joined by Ask The Expert host Amy Board and Mental Health Matters Too Founder, Debbie de la Riva for a conversation on chronic pain and mental health.
Watch LIVE on Facebook.
Visit Mental Health Matters Too.
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Thank you to our Presenting Sponsor, Takeda. Visit bleedingdisorders.com to learn about how Takeda is responding to COVID19.
Patrick is joined by musical artist Trevor Martin for a special interview and performance on the day his new single 'Go-To' debuts!
Watch LIVE on Facebook
Listen to 'Go To' from Trevor Martin
Subscribe to The BloodStream PodcastThank you to our Presenting Sponsor, Takeda.
Visit bleedingdisorders.com to learn how Takeda's responding to COVID19.
Patrick & Natalie discuss COVID’s backlogging elective surgeries, Debbie & Amy unpack stress and coping, and DJ Pete Isaacs joins for an interview on chronic pain. Happy Mental Health Awareness Month!
Presenting Sponsor: Takeda
Like Segment Sponsor: Genentech
Natalie’s Like Segment Links
How The Brain Can Change Your Experience of Pain
Visit Mental Health Matters Too for more resources.
Listen to The Pain Podcast from BloodStream Media
Presented by Tremeau Pharmaceuticals.
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Patrick catches up with New England Hemophilia Association Executive Director, Rich Pezzillo.
Watch LIVE on Facebook
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Check out all of BloodStream Media's Podcasts
Thank you to our Presenting Sponsor, Takeda. Visit bleedingdisorders.com to learn how Takeda’s responding to COVID19.
Drama Del Rosario catches up with Teen Impact Award honorees from previous years to learn what the honor has meant to them! Adam Lynch Scholarship applications and 2020 Teen Impact Award nominations close May 1st! Nominate an inspiring young person today at TeenImpactAwards.com ! Subscribe to and rate The BloodStream Podcast
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Find all of our bleeding disorders podcasts on BloodStreamMedia.com
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Thank you to our Presenting Sponsor, Takeda. Visiting bleedingdisorders.com to learn how Takeda’s responding to COVID19.
Natalie and Patrick discuss COVID’s unique impact on men versus women, catch up with James Hunt from the UK Haemophilia Society and clinical trial participant Luke Pembroke, share takeaways from WFH’s recent COVID webinar as well as highlights from the World Hemophilia Day (4/17) LIVE that streamed from BloodStream Media’s Facebook Page.
Presenting Sponsor: Takeda
Segment Sponsor: Genentech
#WHD2020 Facebook Live Video
Like Segment: Why COVID19 is different for men and women
James Hunt on Twitter
Luke Pembroke on Twitter
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Natalie and Patrick catchup over Zoom with their mothers, who are working with COVID patients inside Ohio and New York City hospitals, respectively.
Presenting Sponsor: Takeda Subscribe to and rate The BloodStream Podcast
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Find all of our bleeding disorders podcasts on BloodStreamMedia.com
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Safety, Vigilance and New Frontiers (Episode 3, The Factor Revolution, originally published 10/2017) pulls together more interviews with advocacy and industry leaders, like Michelle Rice (Senior VP of External Affairs, National Hemophilia Foundation), Andy Slavitt (Former Obama Administration Medicare, Medicaid and ACA Overseer), and Dr. Steven Pipe (Director, Coagulation Laboratory, University of Michigan), who give incredible insight on the future of bleeding disorders treatments and access to care. This series - and especially this episode - was created in partnership with The HIV Story Project and the seminal documentary film, Bad Blood. BloodStream Media is proud to present The Factor Revolution: The Last 60 Years in Hemophilia Treatment, a three-episode special series with over forty interviews from community members, doctors, experts and advocates. We take a deep look at the history of factor treatment from the 1950's to today. The Factor Revolution pulls together source material, news reports, white papers, and original audio content from the film Bad Blood and the "HIV Story Project." Presenting Sponsor: Takeda Subscribe to and rate The BloodStream Podcast
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Connect with BloodStream Media:
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
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The Contamination Crisis (Episode 2, The Factor Revolution, originally published 10/2017) pulls together first-hand accounts from survivors of the HIV/AIDS outbreak, often referred to in our community as "the contamination crisis." This series - and especially this episode - was created in partnership with The HIV Story Project and the seminal documentary film, Bad Blood. BloodStream Media is proud to present The Factor Revolution: The Last 60 Years in Hemophilia Treatment, a three-episode special series with over forty interviews from community members, doctors, experts and advocates. We take a deep look at the history of factor treatment from the 1950's to today. The Factor Revolution pulls together source material, news reports, white papers, and original audio content from the film Bad Blood and the "HIV Story Project." Presenting Sponsor: Takeda Subscribe to and rate The BloodStream Podcast
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Connect with BloodStream Media:
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
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The Revolution Begins (Episode 1, The Factor Revolution, originally published 10/2017) takes a look at the early breakthroughs of the 1950's, that ended centuries of stagnation in hemophilia treatment. From whole-blood treatments to the discovery of cryo, to the first iterations of what we now know as "factor," we talk to experts and advocates about the incredible discoveries that almost didn't happen. You have to hear it to believe it. BloodStream Media is proud to present The Factor Revolution: The Last 60 Years in Hemophilia Treatment, a three-episode special series with over forty interviews from community members, doctors, experts and advocates. We take a deep look at the history of factor treatment from the 1950's to today. The Factor Revolution pulls together source material, news reports, white papers, and original audio content from the film Bad Blood and the "HIV Story Project." Presenting Sponsor: Takeda Subscribe to and rate The BloodStream Podcast
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Connect with BloodStream Media:
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream on Facebook
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Blood brother Michael Bishop joins to discuss quarantine life with Patrick, Ask The Expert host Amy Board joins to share her experience in self-isolation, plus WFH, HFA, and NHF updates!
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Find all of our bleeding disorders podcasts on BloodStreamMedia.com
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NHF COO Dawn Rotellini joins to discuss NHF's response to coronavirus and how she's passing the time at home, hematologist Dr. Robert Sidonio offers perspective and experience of these unprecedented times, and Natalie shares tips and tricks for staying sane while in quarantine! Subscribe to and rate The BloodStream Podcast
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Connect with BloodStream Media:
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
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Patrick & Natalie are joined by Ask The Expert’s Amy Board for a health-data driven Like Segment, and the hilarious Zach Anner joins to talk comedy, cerebral palsy, and to share his well-balanced perspective of life.
Zach Anner’s If At Birth You Don’t Succeed
Zach Anner’s YouTube Channel
2020 Teen Impact Awards & Adam Lynch Scholarship
“These startups are innovating the future of healthcare”
Presenting Sponsor: Takeda
Like Segment Sponsor: Genentech
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Connect with BloodStream Media on Facebook
Come with @pjlynch on Twitter
Patrick and Natalie discuss air travel this week, doctors Mike & Ahmar from Cheat Codes update us on the numbers and recommendations, Jeremy from NY shares his chapter leadership and personal experience, and Emily from CT shares what her first week in quarantine has been like. Plus updates on national and regional events and BloodStream’s plans for the near future.
CoronaVirus.com
STBhemo.com
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Connect with BloodStream Media:
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Check out Believe Limited’s Other Work:
Bombardier Blood: bombardierblood.com
Hemophilia: The Musical: breakingthroughhemophilia.com
My Beautiful Stutter: mybeautifulstutter.com/
Stop The Bleeding!: stbhemo.com
Teen Impact Awards: teenimpactawards.com
The Science Fair: thesciencefair.org
Indian-Canadian-American writer, actress, and comedian Natasha Chandel from the 'Kinda Dating' podcast joins the show to discuss her debilitating eight-year odyssey with undiagnosed Lyme disease, her writing for Season Two of Netflix's 'Mr. Iglesias,' and her acting in 'Baker's Dozen' on Amazon Prime!
Natasha on Instagram
Natasha on Twitter
Listen to the Kinda Dating Podcast
Watch Baker's Dozen on Amazon Prime
Subscribe to and rate The BloodStream Podcast
Subscribe to and rate The Ask The Expert Podcast
Subscribe to and rate BloodStream Journeys
Subscribe to and rate Cheat Codes: A Sickle Cell Podcast
Connect with BloodStream Media:
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
Check out Believe Limited’s Other Work:
Bombardier Blood: bombardierblood.com
Hemophilia: The Musical: breakingthroughhemophilia.com
My Beautiful Stutter: mybeautifulstutter.com/
Stop The Bleeding!: stbhemo.com
Teen Impact Awards: teenimpactawards.com
The Science Fair: thesciencefair.org
BloodStream's Patrick James Lynch is joined by Dr Ahmar Zaidi & Dr Mike Callaghan from Cheat Codes: A Sickle Cell Podcast to discuss the coronavirus (COVID-19) and what it means for people affected by sickle cell disease, hemophilia, and beyond. NHF MASAC Letter Regarding Coronavirus CDC's "About Coronavirus" Page (regularly updated) Subscribe to and rate Cheat Codes: A Sickle Cell Podcast
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