Rare Diseases SA #AwareAboutRare: Recent Episodes
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We know how difficult it is for patients to attend patient meetings / workshops / conferences etc. So, we have found a way to bring the information right to their laps, via our #AwareAboutRare series.
Topics are varied, from disease specific discussions with key opinion leaders, to supportive talks aimed at helping patients and families cope a little easier.
Cancer is a debilitating disease and can place an enormous physical, emotional, social, and financial burden on the people providing long-term, continuous care for affected patients. Join us for our third online webinar, in recognition of World Cancer Day in February. Brought to you by Novartis, Rare Diseases South Africa (RDSA), in association with CANSA, The Breast Health Foundation and Meta Buddies, would like to invite all caregivers, patients and those advocating to bridge the gap for patient care to join us as we discuss these challenges.
Debilitating diseases such as NETS (Neuroendocrine Tumours) and Pituitary Tumours can place an enormous physical, emotional, social, and financial burden on the people providing long-term, continuous care for affected patients. Join us for our second online webinar, in recognition of National Family Caregivers Month in November. Rare Diseases South Africa (RDSA) would like to invite all caregivers and patients to join us as we discuss the challenges of being a caregiver, and possible solutions.
What are Clinical trials? Clinical trials are research studies performed on people that are aimed at evaluating a medical, surgical, or behavioural intervention. They are the primary way that researchers find out if a new treatment, like a new drug or diet or medical device is safe and effective in people. Often a clinical trial is used to learn if a new treatment is more effective and/or has less harmful side effects than the standard treatment. Other clinical trials test ways to find a disease early, sometimes before there are symptoms. Still others test ways to prevent a health problem. A clinical trial may also look at how to make life better for people living with a life-threatening disease or a chronic health problem. Clinical trials sometimes study the role of caregivers or support groups. The aim of the webinar is to help the patient community understand clinical trials, how they come about, how patients can keep abreast of what it taking place and how they can participate. This webinar will be a guided discussion where patients can ask questions and get a better understanding of the process.
Rare Diseases South Africa, in association with Path, SAHPRA, and SAHTAC, will be hosting a webinar on Thursday 7th October on Understanding Section 21 and Off-label Products. This webinar is aimed at educating the public on the use of Off-Label Medication, Education on the SAHPRA process, and medical regulations to enhance public understanding and mitigating confusion regarding the use of unregistered medication. Speakers include: •Kelly du Plessis – Section 21 and off-label medication – the patient experience on the ground •Dr Shyamli Munbodh – The purpose of Section 21 and the application process. Off-label medication usage – what you need to know and understand. We encourage all our community members and healthcare users to attend this informative webinar. We look forward to seeing you online and engaging on this important topic.
A special thank you to Dr Ashmore, Corno, Danelle and Cole for speaking in this webinar and helping to create awareness.
"I'm an autoimmune warrior who started learning all about the wellness industry at the age of 15 when I was diagnosed. My heart told me living a healthy lifestyle was the only way. I turned this interest and passion into my life purpose and started with a raw nutrition and body mind nutrition certification. The rest is history quite frankly:) I opened my own health shop in 2014, after finishing my honors in Internal Auditing. I spent most of my varsity years ill and still learning about all the aspects to natural healing. I started studying fitness when my shop opened as well as holistic health coaching. I have a true passion for sharing all the health and healing possibilities with others, and my niche client seems to be the ambitious woman:) I then opened my own fully fledged Fitness studio in 2020 (after operating out of a garden) and took this studio online and started my holistic coaching practice online as well! It will never end for me, too many exciting healing options for my lovely clients. I am here for you! For one aspect or another, I believe all areas need to be in balance for one to experience full health."
Contact Izzy directly via isilda@izzyfitness.com
Join us for our third ever Facebook Takeover with Jane Linley-Thomas and Paul Bushell from KindnessCan.
Radio personality and mom of 3 Jane Linley-Thomas and psychologist and author Paul Bushell share with us that as simple as it may sound, kindness as a core human value, can have a profound impact on the way people do life and work. KindnessCan is a movement that shares the joy and power of kindness. It’s a movement for individuals, corporates, schools and communities from around the world to join. It’s a movement of Talks, Workshops, Activations, Podcasts, Blogs and Videos.
This webinar allowed us to discuss the challenges our Metastatic Breast Cancer community of patients, caregivers and healthcare professionals have faced amidst the COVID-19 pandemic.
September is Blood Cancer and Childhood Cancer Awareness Month. Join us on Wednesday 30 September as we take this opportunity to raise awareness of blood cancers and disorders. In this month’s webinar we will be talking to Dr. Yasmin Goga , about childhood blood cancers, general blood cancers and rare blood cancers in South Africa, Cole Cameron, CEO at Igazi Foundation about blood cancers during the COVID pandemic as well as hear from Trevor Steyn, patient and Leader of Chronic Myeloid Leukemia Support and Advocacy South Africa (CMLSA).
Join us for our second ever Facebook Takeover with Smergos. They are dedicated to creating a range of wheelchair bags and accessories that provide functionality through a choice of simple, personalized designs.
https://smergos.com/
Call: Nick +27 74 188 8677 / Nicole +27 83 441 0814
Email: info@smergos.com
Facebook: https://www.facebook.com/Smergos/
Instagram: https://www.instagram.com/smergos1/
Twitter: https://twitter.com/Smergos1
August is Organ Donor Awareness Month, & we are so grateful for this opportunity to create more awareness & host a Facebook takeover alongside Tell!
Find out more about them at www.tell.org.za
In this months webinar we will be talking to friends and colleagues of CANSA, to discuss what patients and the public should know about Metastatic Melanoma. With an exciting lineup of speakers, we will be addressing skin cancer prevention in South Africa, as well as hear from a skin cancer survivor on her journey with this disease. In addition, we chat to CANSA’s National Relationship Manager, Cara Noble, who will take us through CANSA’s patient support programmes as well as tell us a little more about the MiiSkin – skin check app.
The topic for this webinar is #Connections
~ Dr Dion Opperman – Neurologist • Treatment and access • When and why to switch treatment • Taking care of yourself during and after #covid19 • And lastly touching on the importance of #connections in MS
~ Kelly du Plessis – CEO of Rare Diseases South Africa The need for support groups and how they integrate into the healthcare system
~ Dr Helen Malherbe – Director of Research and Epidemiology at RDSA Prevalence of MS in South Africa
June 19th is World Sickle Cell Awareness Day. The international awareness day is observed annually with the goal to increase public knowledge and an understanding of sickle cell disease, and the challenges experienced by patients and their families and caregivers.
June is Myasthenia Gravis Awareness month. In light of this, we will be hosting a webinar to discuss updates on MG treatments as well as MG Disability assessments, for those patients needing to be medically boarded due to their health.
July is Cleft and Craniofacial Awareness Month.
WHAT YOU’LL LEARN: Challenges of the COVID-19 pandemic relating to surgeries Closing the Gap for Parents A Lived Experience – Sylvia Mchunu
Are you a caregiver and Suffering from Compassion Fatigue? Then this podcast is for you. Hosted by Rare Diseases SA, Kim Ballantine, our speaker, has 29 years’ experience in the area of people development, specifically mentoring and coaching. She has worked for the Human Sciences Research Council as an Industrial and Research Psychologist conducting research, training, and development.
Trimethylaminuria is a metabolic disorder that occurs when the body is unable to break down certain nitrogen-containing compounds such as trimethylamine. This podcast discusses the recommended dietary adjustments to reduce the impact of this condition, as well as an indepth look at the Genetic inheritance of this condition.