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/!
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
Working Toward the Future, Feat. GACI Global and Inozyme Pharma
The IRSF: 40 Years of Making Connections
The 2022 Living Rare, Living Stronger Patient and Family Forum
Getting the Support You Need, feat. Cancer Commons
The Importance of Persistence, feat. Patient Advocate Nathan Ehrlich
Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust
Exciting Rare Disease Developments in the EU, feat. HAE Junior
Preview: Rare Disease Week 2022 feat. The EveryLife Foundation for Rare Diseases
Bridging the Challenges in Cell Therapies, feat. Dr. Brad Heller of Achieve Clinics
The Importance of Getting Involved, Feat. Friedreich‘s Ataxia Advocate Kyle Bryant
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