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.
All About Koolen de-Vries Syndrome, feat. Patient Advocate Ashley Point
PKD and the Gift of Life, feat. Patient Advocate Valen Keefer
The Power of Resiliency, Feat. Multiple Myeloma Patient Advocate Keisha Hickson
Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics
Ewing Sarcoma and the New Normal, feat. Patient Advocate Brandi Benson
50 Years of Supporting the TSC Community, feat. TSC Alliance President and CEO Kari Rosbeck
Helping Rare Parents Help Themselves, feat. Ronda Thorington, LPC
IPF and the Importance of Clinical Trials, feat. Patient Advocate Murray Walz
The MS Poltergeist, feat. Patient Advocate Jennifer Angus
The Bespoke Gene Therapy Consortium's New Regulatory Playbook, feat. The Foundation for the National Institutes of Health and Taylor's Tale
Hemophilia and Axel's Story, feat. Patient Advocate Kristina Robinson
The Road to Resilience and Self-Advocacy, feat. Patient Advocate Kecia J.
Rare Cancer, Finances and Families, feat. Tony Laudadio of the Tony Foundation
The Unmet Need in Rare Disease, feat. Dr. Emil Kakkis of Ultragenyx
The Intersection of Motherhood and Chronic Illness, Feat. aHUS Patient Advocate Taylor Coffman
Going All In On Support, feat. Patient Advocates Kathi and Dave Herzog
Learn About NMOSD feat. Patient Advocates Dr. Maggie Kang and Nell Choi
Building Equity in the Breast Cancer Community, feat. Jasmine Souers of the Missing Pink Breast Cancer Alliance
Von Hippel-Lindau Disease: Meet Patient Advocate Justin Corbin
How to Support the Supporters, feat. The Courageous Parents Network
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