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).
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. ...
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. ...
