Wait, How Do You Spell That? A Rare Disease Podcast
Health & Fitness
During rare disease week, we had the chance to talk to Monica Weldon, whose son was the sixth person diagnosed with SYNGAP-1, a gene mutation linked to autism. She tells us about her journey from working as a school teacher to becoming the CEO and founder of Bridge the Gap, the first SYNGAP-1 advocacy organization in the world. She shares what it was like to receive a diagnosis that had no structure in place for her son, and how she pushed through the hard times and make progress in research and awareness of sensory processing disorders. Check out Bridge the Gap online at https://bridgesyngap.org/!
The Economic Burden of Rare Disease
Helping Patients Achieve Their Potential With HAE Junior
Fighting for Access and Awareness With Dreamsickle Kids
An Editor Shares Her Cystic Fibrosis Story
20 Years of Connections: The Glanzmann's Research Foundation
No Day Wasted: The Adam Settle Story
Ilana's New Journey and Ehlers-Danlos Syndrome
Danny's Dose: Prepare for the Worst and Work Toward the Best
Rare Reflections: How Illustrator J.G. Jones is Bringing Attention to MPN Patients Through Art
Rarest of the Rare: Neena Nizar and the Jansen's Foundation
A Disease Advocate Gets Personal About Diagnosis and Treatment Denials
Cushing's Syndrome and Service Dogs: Discussing Disease Advocacy With Amy Dahm
Discussing Diagnosis and Access With the EveryLife Foundation for Rare Diseases
Decentralizing Clinical Trials with Harsha Rajasimha from Jeeva Informatic Systems
Why the healthcare system needs to talk about black health disparities
"I found out I had Huntington's Disease through a letter in the mail" talking about HD, Ostenecrosis, and the future with Antonio Maltese
Meditation's relationship with pain, anxiety, and trying not to be sanctamonious
Putting the pieces back together with Lynzi Russell from the Connecting Families with Urea Cycle Disorder Foundation
Young adults changing rare disease legislation, ft. Dan Pezatta from YARR
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