Wait, How Do You Spell That? A Rare Disease Podcast
Health & Fitness
Hello and Happy Rare Disease Day! This week, we discuss some exciting developments concerning rare disease awareness in the EU, specifically in the Czech Republic, with Camelia Isaic and Anežka Dašková of HAE Junior. To learn more about HAE Junior, click here. More information about HAE Junior art exhibition can be found here. Read more about the EU Council Presidency's focus on rare disease for 2022-2022 here. And keep up with Anežka's YouTube Channel here.
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
Preview: Rare Disease Week 2022 feat. The EveryLife Foundation for Rare Diseases
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