Wait, How Do You Spell That? A Rare Disease Podcast
Health & Fitness
This week, we speak to Jamas LaFreniere, president and founder of the Sophie's Hope Foundation and CureGSD1b -- two nonprofits dedicated to finding a cure for Glycogen Storage Disease Type 1B. GSD is a group of rare metabolic disorders characterized by a missing enzyme that allows the liver to produce glycogen.
Learn how to support the Sophie's Hope Foundation here.
Learn more about the Cure GSD1B Alliance here.
Pemphigus and Pemphigoid: Talking Rare Disease Dermatology
The 2021RAREis Scholarship
Narcolepsy: A 20-Year Journey to Diagnosis
Sharing Patient Voices With Elephants and Tea
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
Join Podbean Ads Marketplace and connect with engaged listeners.
Advertise Today
Create your
podcast in
minutes
It is Free
HyberNation: Sleep Stories and Meditations
Good Nurse Bad Nurse
The Relaxback UK Show
این نقطه
Nothing much happens: bedtime stories to help you sleep