Patient & Family Resources
Due to the rarity of RYR-1-Related Diseases (RYR-1-RD), receiving this diagnosis can be an anxiety-provoking and isolating experience for both the affected individuals and their families.
The RYR-1 Foundation is here to support you, offering resources through our website, social media channels, and The RYR-1 Foundation International Family Conferences. Many individuals and families affected by RYR-1-RD who are in contact with the organization are also active in supportive online communities. These groups have been valuable resources and provide great support for many individuals affected by RYR-1-RD and in contact with The RYR-1 Foundation. There are excellent support groups on Facebook, including “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, consider joining the “Periodic Paralysis Support Network.” To join these groups, search for the group names on Facebook and request to join. These are “closed” groups, meaning you’ll need to request permission to join.
For those interested in finding clinical trials for RYR-1-RD, you can explore options on ClinicalTrials.gov. At the moment, there are two active trials, though they are not yet recruiting participants. Be sure to subscribe to our Newsletter and follow us on social media for updates and announcements regarding clinical trials.
Additionally, the McAndrews, Mehalick, Connolly, Hulse, and Ryan, P.C. law firm offers a Disability and Future Planning Presentation that may be useful. They specialize in special education, estate planning, and disability law.
For further assistance, please explore the additional affiliations and external resources listed below.
