Episode 12: Effie Parks and Spela Mirosevic

Episode 12 October 13, 2021 00:46:48
Episode 12: Effie Parks and Spela Mirosevic
Few & Far Between
Episode 12: Effie Parks and Spela Mirosevic
/

Show Notes

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.

Other Episodes

Episode 15

December 01, 2021 00:40:52
Episode Cover

Episode 15: Dr. Terry Jo Bichell, Founder and Director of COMBINEDBrain

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. ...

Listen

Episode 10

September 15, 2021 00:44:02
Episode Cover

Episode 10: Sharon Terry, CEO Genetic Alliance

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. ...

Listen

Episode 7

August 04, 2021 00:38:14
Episode Cover

Episode 7: US Congressman Gus Bilirakis

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

Listen