Patient & Family Resources
Due to the rarity of RYR-1-related diseases, receiving this diagnosis can be an anxiety-provoking and isolating experience for an affected patient and their families.
The RYR-1 Foundation serves as a resource for patients and their families through this website, social media, and RYR-1 International Family Conferences.
In addition, there are nice support groups on Facebook called “Central Core Disease & Minicore: a place for support, learning & friends,“ “RYR-1 Families,“ and “Living with RYR-1–Support Group.” A lot of individuals affected by RYR-1 and who are in contact with The RYR-1 Foundation are part of these groups. They find them to be excellent resources and support systems. To join the groups, type the names into your Facebook search and they should appear in your search results. They are “closed” groups which means you need to ask permission to join.
Additional external resources include:
1. Malignant Hyperthermia Association of the U.S. (MHAUS)
2. Find Empathy: Therapists That Specialize in Health
3. American Physical Therapy Association (APTA)
4. Neurological Physical Therapy (PT)
5. PA Department of Human Services
8. Castleman Disease Collaborative Network’s ROADMAP Drug Repurposing Tool
