Patient & Family Resources
Due to the rarity of RYR-1-Related Diseases (RYR-1-RD), receiving this diagnosis can be an anxiety-provoking and an 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 The RYR-1 Foundation 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.” If you are experiencing symptoms of periodic paralysis, check out the “Periodic Paralysis Support Network.” A lot of individuals affected by RYR-1-RD 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.
A lot of individuals affected by RYR-1-RD 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.
There is a Disability and Future Planning Presentation available from McAndrews, Mehalick, Connolly, Hulse and Ryan, P.C. law firm that specializes in special education, estate planning, and disability law.
Additional affiliations & external resources can be accessed below.
