THE RYR-1 FOUNDATION Information

The RYR-1 Foundation is a 501(c)(3) public charity based in Pittsburgh, Pennsylvania, United States. The mission of The RYR-1 Foundation is to support research leading to an effective treatment or a cure for RYR-1-related diseases (RYR-1-RD). To achieve this mission, The RYR-1 Foundation pursues the following goals: Support Research: The RYR-1 Foundation makes grants to researchers interested in RYR-1-RD. As the only organization solely dedicated to RYR-1-RD, we fund, promote, and highlight research in this area. Our ongoing development of a patient registry is also key to promoting clinical trials of potential therapies. Medical Professional Education: The vast majority of medical professionals have never heard of RYR-1-RD. The RYR-1 Foundation raises awareness through resources on its website, including the latest medical literature, as well as direct meetings with medical professionals around the world. Patient/Family Support and Advocacy: Due to the rarity of RYR-1-RD, receiving this diagnosis can be an anxiety-provoking and isolating experience for affected individuals and their families. The RYR-1 Foundation serves as a resource for patients and their families through its website, other forms of social media, and Family Conferences.