Wait, How Do You Spell That? A Rare Disease Podcast
Health & Fitness
In this episode, we speak with Patient Advocate Nathan Ehrlich about SAMD9L mutations and their connection to a range of conditions, including bone marrow failure disorders, cytopenia and ataxia-pancytopenia syndrome. If you'd like to get in touch with Nathan, you can email him at nathan.ehrlich@gmail.com. You can also check out the SAMD9L mutations Facebook support page here.
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
When your son has the sixth SYNGAP-1 diagnosis in the world- Ft. Monica Weldon from Bridge the Gap
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