Wait, How Do You Spell That? A Rare Disease Podcast
Health & Fitness
Patient Worthy's award-winning podcast is back! In this episode, we discuss Von Hippel-Lindau Disease. That's a genetic condition that causes constant tumor growth, commonly in the eyes, spine, brain and kidneys. Patient advocate Justin Corbin shares his diagnosis and treatment journey, which stretches from the 1990s today.
Read more about Justin's journey in this interview over at PatientWorthy.com.
To learn more about Von Hippel-Lindau Disease, check out the VHL Alliance.
Chronic conditions and rare diseases don't discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a journey to share, reach out to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.
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
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
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