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.
"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
You're not failing at self-care: staying okay-ish in a pandemic
Not just carriers ft. Taylor Kane from Remember the Girls
PKU is NOT like that time I was vegan!
Adulthood is hard! Ft. Anna from Our Odyssey (Live Recording)
Share your story! But only if you want to.
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