Wait, How Do You Spell That? A Rare Disease Podcast
Health & Fitness
On today's episode, we sit down with two of the co-founders of GACI Global, a nonprofit organization centered around families affected by Generalized Arterial Calcification of Infancy. We also speak with the Vice President of Physician and Patient Strategies at Inozyme Pharma, which is pursuing novel therapeutics for the treatment of abnormal mineralization disorders such as GACI. Learn why close cooperation is so important in the development of treatments for rare conditions and why newborn screening is absolutely vital.
Important Links
GACI Global Homepage
GACI Global Worldwide Walk 2022
Inozyme Pharma Homepage
Inozyme Patient Resources
Inozyme Clinical Trial Information
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
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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