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.
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. ...
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. ...
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. ...
