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.
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
The Potential of CAR T-Cell Therapy, Feat. Dr. Robyn Stacy-Humphries
Not Just Surviving, But Thriving With Pheo vs. Fabulous
Hanging Onto Hope in the Face of AML
The Importance of Connection With Jordan‘s Guardian Angels
Awareness and Improvement: Discussing Narcolepsy With a Sleep Medicine Doctor
A Lifetime of Research with Dr. Cannon of the Periodic Paralysis Association
Building the Connections with the SYNGAP Research Fund
Making the "Invisible," Visible With Journalist Karina Sturm
Cure Mito Foundation: The Importance of Patient Registries
37 Years of Research With the TSC Alliance
Staying Strong and Pressing On With the Alagille Syndrome Alliance
Living Rare, Living Stronger: NORD Patient and Family Forum
Author Tom Seaman Talks About Adapting to Adversity
Sophie's Hope and GSD1B
Pemphigus and Pemphigoid: Talking Rare Disease Dermatology
The 2021RAREis Scholarship
Narcolepsy: A 20-Year Journey to Diagnosis
Sharing Patient Voices With Elephants and Tea
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