Few & Far Between: Recent Episodes
Chris O'Brien
Welcome to Few & Far Between! Chris O'Brien, CEO of Biorasi, is your host for conversations on the cutting edge - from clinical research and policymakers to rare disease advocates and industry leaders.
“Our studies are open for those that have exhausted standard of care, and we're showing improved responses, and the data is promising. So, I really hope that as we scale up and generate more data, we can actually move to newly diagnosed patients.” - Diana Azzam, PhD, Assistant Professor at Florida International University, Co-Founder at First Ascent Biomedical
Welcome to the latest episode of Biorasi's Few & Far Between podcast. Join host Chris O'Brien and guest, Diana Azzam, as they discuss technological innovations in guiding individualized patient treatments.
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"It's amazing how many companies there are and how many opportunities for a kind of a match between a human that needs some help and a company that can help." - Craig Serra, Head of Clinical Research, Scientific, and Technical Engagement, Flatiron Health
Welcome to the latest episode of Biorasi's Few & Far Between podcast. Join host Chris O'Brien and guest, Craig Serra, as they discuss improving and extending the life of every person with cancer and learning from those experiences.
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"I learned very early on that the stupidest cancer cell was cleverer than the cleverest oncologist." - Justin Stebbing, Editor-in-Chief of Oncogene, previously the UK's first NIHR Research Translational Professor of Oncology, Professor of Biomedical Sciences, Anglia Ruskin University, Cambridge.
Welcome to the latest episode of Biorasi's Few & Far Between podcast. Join host Chris O'Brien and guest, Professor Justin Stebbing, as they discuss insights into oncology, knowledge sharing, and the virtuous circle of translational research.
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"Technologies have changed enormously in terms of how we can basically procure, preserve, and then interrogate a tumor specimen...like effectively in real time, like a living cancer specimen." - Dr. Keith Flaherty, Director of Clinical Research at Massachusetts General Hospital Cancer Center, Professor of Medicine at Harvard Medical School, and Associate Physician of Hematology and Oncology at Mass. General Hospital.
Welcome to the latest episode of Biorasi's Few & Far Between podcast. Join host Chris O'Brien and Dr. Keith Flaherty, Director of Clinical Research at Massachusetts General Hospital Cancer Center, as they discuss insights into new therapeutic interventions for oncology patients.
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"Artificial Intelligence is a tool that really levels up and creates almost like an equity for everybody to participate and, when used effectively, to really accelerate medicine's development." - Dr. Ole Isacson, Professor of Neurology and Neuroscience, Harvard Medical School.
Welcome to the February episode of Biorasi's Few & Far Between podcast. Join host Chris O'Brien and Dr. Ole Isacson, Professor of Neurology and Neuroscience at Harvard Medical School and Biorasi Scientific Advisory Board member, as they review the integration of AI into the world of neuroscience.
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"The history of rare disease drug development indicates that once you start looking harder for cases, you often tend to find them." - Will Greene, Prader-Willi syndrome patient advocate and Healthcare Engagement Lead at Roche
Welcome to Biorasi's first Few & Far Between episode of 2024! Join host Chris O'Brien and guest Will Greene, Prader-Willi syndrome (PWS) patient advocate and Healthcare Engagement Lead at Roche, as they explore rare disease diagnoses and the importance of newborn screening as a public health tool.
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"Patients have already been exposed to these large language models (LLMs). Yes, they are aware of the risks, but they are also very aware of the benefits. And we need to engage the public in defining what those [AI] policies are." Isaac [Zak] Kohane, Professor and Chair, Department of Biomedical Informatics, Harvard Medical School
Buckle up for the latest Few & Far Between podcast! We're taking a tour of the current state of AI in healthcare and clinical research. Join host Chris O'Brien and guest Zak Kohane, Professor and Chair, Department of Biomedical Informatics, Harvard Medical School, as they spotlight the evolution of LLMs in the lives of physicians and patients.
"And what I was really surprised about was that everybody was doing data collection in a different way. And I kept thinking that, gosh, there's a lot of recreation of the wheel when advocacy groups have not necessarily ever run a research study. And so I kept thinking about what opportunities do we have across rare disease to really elevate and accelerate all of this work around data collection." - Charlene Son Rigby, CEO at Global Genes
Welcome to Biorasi's Few & Far Between podcast! Join host Chris O'Brien and guest Charlene Son Rigby, CEO at Global Genes, as they discuss how to build an infrastructure for a world where clinical data is ready to be shared with all those who need it.
"So we built the seatbelts before the car, so to speak, wherein we did a project to figure out ways to biocontain these organisms. And the strategy that we used actually drew from all of my past experience in computational protein design and combined it with these incredible new organisms." - Dan Mandell, CEO at GRO Biosciences
Welcome to Biorasi's Few & Far Between podcast! Join host Chris O'Brien and guest Dan Mandell, CEO at GRO Biosciences, as they discuss the latest breakthroughs in protein design - from biocontainment to creating a new amino acid alphabet.
"In research or in biotech, time is expensive. Time is the most expensive thing that you have." - Stephanie Wisner, Author, Co-Founder at Centivax
Biorasi is excited to welcome Stephanie Wisner to the Few & Far Between podcast. Stephanie is the author of "Building Backwards to Biotech: The Power of Entrepreneurship to Drive Cutting-Edge Science to Market." Join host Chris O'Brien as we explore the multitude of opportunities and pitfalls in today's biotech industry.
Stephanie's book is availabe on Amazaon at https://a.co/d/4afgMpR
"What can I contribute that my doctor can't contribute? And that's a real 'a-ha' moment when we share with them how they're the experts in their condition and they know more about the everyday kind of what they go through than their doctor even would because they're not with them 24/7." - Pam Cusick, SVP, Rare Patient Voice
Biorasi's Marc Gas welcomes Pam Cusick, SVP at Rare Patient Voice, to the Few & Far Between podcast for an episode focusing on the power of rare patient input across the clinical trials industry.
Connect with Rare Patient Voice on the road in 2023 at:
UXPA International - Austin, TX - June 20-22
DIA - Boston, MA - June 26-28
Global Genes - San Diego, CA - September 19-21
"We have to rethink the sense of clinical research from the point of view that if we have the possibility to have markers that indicate that there may be hope for that patient, we should do something to hear the voice of that patient and learn." - Dr. Francisco Harrison, CEO and owner, Harrison CST Holding GmbH
Welcome back to part two of our conversation with Dr. Francisco Harrison. Join us in this Few & Far Between episode as we dive deeper to discuss new opportunities, new responsibilities, and new experiences...including walking the 500-mile Camino trail from France to the Santiago de Compostela in Spain.
"I love clinical research. I will spend my life in clinical research." Dr. Francisco Harrison, CEO and owner, Harrison CST Holding GmbH
Biorasi welcomes Dr. Francisco Harrison to the Few and Far Between podcast for a special two-part episode. In part one, we track Dr. Harrison's origin story - from medical school to his first forays into clinical research.
"We work with hundreds of patients a month, helping them understand their own medical history and then tracking what happens to them in the future and providing them and their physicians with decision support and alternative thinking about ways to treat their cancer." Mika Newton, CEO at xCures
Biorasi welcomes Mika Newton to the Few & Far Between podcast to examine how the connection between AI and oncology leads to a more patient-centric world.
“I think one of the key insights and observations you make when you have a child who's sick and you spend time with other families who have sick kids is that we all have a tremendous amount of hope that a potential treatment will come to the forefront for our child.” – Dr. Alok Tayi, Founder and CEO of Vibe Bio
Biorasi welcomes Dr. Alok Tayi to the Few & Far Between podcast to explore the power and determination that patients have when it comes to finding a treatment for rare disease.
"Humans have the right to study themselves." - Jamie Heywood, CEO at Alden Scientific
Welcome back to Part 2 of our special Few & Far Between podcast episode with guest, Jamie Heywood. Continuing our discussion on the role of engineering in clinical research - and making the world a better place for people - we'll explore the path to innovation, including data tracking strategies and securing project funding.
"I think all disciplines go through a process, a journey of being imagined and then becoming a science and then becoming a discipline of engineering." - Jamie Heywood, CEO at Alden Scientific
Biorasi welcomes Jamie Heywood to the Few & Far Between podcast to discuss the critical role engineering plays in clinical research.
"Try to find the people who have a really strong background in regulatory science, who really understand the fundamentals, and who you believe can think creatively about the challenges of the cell therapy space." - Chris Min, Longeveron
Biorasi welcomes Chris Min to the Few & Far Between podcast for an inside look at the cell therapy industry and the importance of finding the right team to support your clinical trials.
“We can’t take the orphan drug revolution for granted.“ Biorasi’s Few & Far Between Podcast welcomes Jim Geraghty, author and biotech industry veteran, to discuss the necessity and viability of orphan and rare disease research - for both patients and VC investors alike.
Can data sharing make the world a better place? Listen in to the latest episode of Few & Far Between. Biorasi CEO, Chris O'Brien, welcomes Gadi Lachman, President and CEO of TriNetX, to discuss real-world solutions for accessing and refining patient data in the clinical trials industry.
What makes India a smart and viable setting for today’s clinical trials? Join us for the latest episode of Few & Far Between. Biorasi's own Dr. Sagar Patil welcomes one of his early mentors, Dr. Arun Bhatt, for an in-depth discussion into the history and future of clinical research in India.
How can DAOs - Decentralized Autonomous Organizations - improve rare disease research? Biorasi's Few & Far Between Podcast welcomes Dr. Jocelynn Pearl, Senior Scientist at Tune Therapeutics and host of the Lady Scientist podcast, to discuss this new connection between clinical trials and cryptocurrency.
How do you start in building a rare disease foundation? Biorasi's Few & Far Between Podcast Welcomes Jill Hawkins, Founder and President of the FAM177A1 Research Fund, to discuss the impact of an ultrarare disease on her family and the importance of moving forward towards awareness, support, and treatment.
What do the next 100 years have in store for healthcare and clinical research? Biorasi's Few & Far Between podcast welcomes Professor Bertil E. Lindmark MD, PhD, author and CMO at Galecto, Inc., for an in-depth discussion on the biological revolution and trends in the life sciences.
How do you obtain the best possible patient care available? On this week's Few & Far Between podcast, host Chris O'Brien welcomes patient advocacy innovator Leslie Michelson for a conversation on the importance of patient support, guidance, and healthcare accessibility.
On this week’s Few & Far Between podcast episode, Biorasi’s CEO, Chris O'Brien, welcomes Karen Petrou and David Brint for an in-depth discussion on BioBonds and how they can jumpstart funding in clinical research for rare disease and other disorders.
Why are advocacy and accessibility so important to rare diseases such as Batten Disease? On this week’s Few & Far Between podcast episode, Biorasi’s Becky Knockemus talks with Amy Fenton Parker, President and CEO at Batten Disease Support and Research Organization (BDSRA).
Welcome to a special epsiode of Few & Far Between. Our guest this week is oncologist Dr. Alex Adjei, Scientific Advisory Board Member at Biorasi, and Professor of Oncology and Pharmacology at the Mayo Clinic and Mayo College of Medicine in Rochester, Minnesota. Join our host, Dr. Dipali Patel, for an in-depth discussion on lung cancer - an urgent, global disease that requires empathy and understanding.
Raising awareness for rare diseases, such as Angelman Syndrome, should not be something parents, patients, and advocates have to do alone. Today's episode of Few & Far Between features Dr. Terry Jo Bichell, Founder and Director of COMBINEDBrain. Biroasi CEO, Chirs O'Brien, is your host for this discussion on biomarkers, treatment, and the rise in community collaboration across rare diseases.
How will a rare disease diagnosis affect your family? Today's Few & Far Between episode features Bo Bigelow, Chairman at the Foundation for USP7-Related Diseases and Co-Founder of DISORDER: The Rare Disease Film Festival, and Trish Flanagan, President at the Yellow Brick Road Project.
How has patient advocacy grown to become the driver of rare disease drug development? In today's episode of Biorasi's Few & Far Between podcast, host Marc Gas, PhD, welcomes Kelly Franchetti, RN, SVP at YPrime, to discuss where advocacy is headed and where it needs to go.
Social media platforms and podcasts are spotlighting the untold stories of rare disease patients and their families. Find out more in today's Few & Far Between podcast episode. Biorasi's Becky Knockemus welcomes guests Effie Parks, host of the Once Upon a Gene podcast, and Špela Miroševič, co-founder and president of the CTNNB1 Foundation.
How important is transparency to the rare disease community? Today's full episode of Few & Far Between features Biorasi's Lindsey Rios, with guests Rebecca Stewart and Nicola Miller from Rare Revolution Magazine.
Why is the sharing of data so crucial to #raredisease research? Tune in for today's full episode of Few & Far Between. Episode 10 features Sharon Terry, CEO at Genetic Alliance and #pseudoxanthomaelasticum (PXE) advocate.
Tune in for today's full episode of Few & Far Between. Episode 9 features Biorasi's Becky Knockemus, Zogenix, Inc.'s Dawn Blessing, and J. Michael Graglia from SynGAP Research Fund, discussing the importance of diagnosing #raredisease early and the critical step of sharing study data.
On today's podcast, speaker and rare disease advocate David Rose talks with Biorasi's Dr. Raul Silveira about occipital horn syndrome and supporting rare disease patients in the workforce.
On today's podcast, US Congressman Gus Bilirakis joins host Wayne Bowden to discuss the importance of rare disease awareness and treatment.
On today's podcast, host Wayne Bowden joins Biorasi's Omar Ibrahim and IBM Watson Health HOPE team members Dr. Mehool Patel and Dr. Dilhan Weeraratne to discuss glioblastoma and the importance of real-world evidence in clinical research.
On today’s podcast, host Wayne Bowden, Vice President of Partnerships and Strategy at Biorasi, talks with Will Maier, VP of Rare Disease, Drug Development Sciences at ICON plc, about clinical trial engagement in the rare disease patient community.
On today’s podcast, host Wayne Bowden, Vice President of Partnerships and Strategy at Biorasi, talks with Marianne Clancy, Executive Director at Cure HHT, about the foundation and their goal of reducing the number of undiagnosed cases of HHT.
On today’s podcast, host Wayne Bowden, Vice President of Partnerships and Strategy at Biorasi, will be discussing insights into market research solutions for rare diseases with Danielle Drayton, PhD, CEO of REACH Market Research.
On today’s podcast, host Wayne Bowden, Vice President of Partnerships and Strategy at Biorasi, will be talking with Julie Walters, Founder and Executive Director of Xperiome and the driving force behind Raremark – an innovative knowledge bank for rare disease patients.
On today’s podcast, Jimmy El Hokayem, Head of the Neurology and Regenerative Medicine Centers of Excellence and Associate Director of Program Development at Biorasi, will be talking with Paula Evans, CEO and Co-Founder of GeneTx Biotherapeutics.
Welcome to Few & Far Between: Conversations About Rare Disease Research with your host, Chris O'Brien. Episode Zero contains everything you need to know about the podcast and Biorasi's goal to provide an open discussion on trending topics and innovations in rare and urgent disease clinical research.