THE RYR-1 FOUNDATION Email Format
Non-profit OrganizationsPennsylvania, United States2-10 Employees
The RYR-1 Foundation is a small nonprofit public charity based in Pittsburgh, Pennsylvania, focused on diseases linked to the RYR-1 gene. It is the only organization exclusively dedicated to RYR-1-related diseases, pursuing a mission to advance treatments or a cure and to support research through grants and a patient registry. It also works to educate medical professionals about RYR-1-RD via resources on its website and direct engagement with clinicians worldwide. It provides resources and advocacy for patients and families affected by RYR-1-RD, including information on its website, social media, and Family Conferences. Recent activities include attending a Research Workshop and Family Conference in June 2025 and launching a Portuguese version of its materials in October 2023, highlighting ongoing outreach from its Pittsburgh base.