Wait, How Do You Spell That? A Rare Disease Podcast
Health & Fitness
Heads up- this was recorded on site at the NIH and the sound quality isn't great. We're sorry! We're learning! Rebekah and Ilana sit down with Anna Laurent from Our Odyssey, a new nonprofit that provides support to young adults living with rare and chronic illnesses. We talk about Alagille syndrome (ALGS), the perils of young adulthood (especially when managing a rare disease), and the importance of being able to talk with people who get it. You can learn more about Our Odyssey at https://ourodyssey.org/ and on social media @_OurOdyssey_.
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
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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