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.
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. ...
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. ...
On today's podcast, US Congressman Gus Bilirakis joins host Wayne Bowden to discuss the importance of rare disease awareness and treatment. ...
