The RYR-1 Foundation
This organization is to raise awareness, educate, provide support, and raise funds for research. The RYR-1 Foundation's mission is to support research leading to an effective treatment or a cure for RYR-1-Related Diseases (RYR-1-RD) by: 1) Research: Grants are funded to researchers interested in RYR-1-RD and developing a patient registry. 2) Medical Professional Education: The vast majority of medical professionals have never heard of RYR-1-RD. We raise awareness through resources on our website, as well as direct meetings with medical professionals around the world. 3) Patient/Family Support and Advocacy: We serve as a resource for patients and their families through our website, other forms of social media, and International Family Conferences.
Founded
2014
2200
X (Twitter)
320
Address
Pittsburgh
Home - ryr1.org Who We Are The RYR1 Foundation is a nonprofit 501c3 public charity which was started by members of the Goldberg Family who have been affected by an RYR1related disease. Currently there is no other organization that exists solely to advocate for and serve the needs of patients and families affected by RYR1Related Diseases RYR1RD. The goal of The RYR1 Foundation is to fill this muchneeded void. Who We Help The RYR1 Foundation works closely with individuals and families affected by RYR1RD researchers biotech and pharmaceutical industries and healthcare providers from across the globe to facilitate communication in the field of RYR1RD fund research advance effective therapies and optimize standards of care to enhance the quality of life in affected individuals.
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News about from their social media (Facebook and X).
The RYR-1 Foundation
A heartfelt thank you to all the expert speakers and patient-led community members who made the 2025 RYR-1-RD Patient-Led International Research Workshop and Family Conference unforgettable. Your insights, stories, and dedication brought knowledge, hope, and inspiration to everyone in attendance. From groundbreaking research to real-world living with RYR-1-RD, these events showed the power of collaboration and community.
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The RYR-1 Foundation
🎥 Now Available: 2025 Family Conference Lectures. 💬 We’re thrilled to share that all 24 recorded sessions from the 2025 Family Conference are now live in our Video Gallery on The RYR-1 Foundation website. 🧠 Learn from leading experts on the latest in: ✅ Clinical care & symptom management ✅ Groundbreaking research & gene therapy updates ✅ Patient experiences & expert panels ✅ Quality of life: ADA rights, education, financial planning & more Whether you missed the event or want to revisit your favorite talks, this is your chance to dive into the latest on RYR-1-RD.
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