Wait, How Do You Spell That? A Rare Disease Podcast
Health & Fitness
This week, we speak with Annie Kennedy from the EveryLife Foundation about their groundbreaking study examining the economic burden of rare disease. We're joined by Marissa Penrod from Team Joseph, a Duchenne muscular dystrophy nonprofit to discuss how these numbers assist in rare disease advocacy. Read the full study here: www.everylifefoundation.org/burden-study
Learn more about the EveryLife Foundation for Rare Diseases here: www.everylifefoundation.org
Learn more about Team Joseph here: www.teamjoseph.org
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
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
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