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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From Social media
News about The RYR-1 Foundation from their social media (Facebook and X).
- The RYR-1 Foundation
- 2025-06-26
💬 “There’s nothing like being in a room full of people who truly understand. (fb) ... more
Liked (2) Commented (0)
- The RYR-1 Foundation
- 2025-06-24
🧬 There’s still time to make an impact. (fb) ... more
Liked (2) Commented (0)Discussions
Odpovědí v diskuzi
1
What strategies can the RYR1 Foundation implement to better engage and support families affected by RYR1-related diseases in their local communities?
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Brooklyn Simmons
2 days ago
Odpovědí v diskuzi
1
How can collaboration between the RYR1 Foundation and pharmaceutical companies expedite the development of new therapies for RYR1-related diseases?
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Brooklyn Simmons
2 days ago
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Together, we can make a real impact in communities around the world. Help us bring hope and support.
What an incredible initiative! Together, we can raise awareness and support those affected by RYR-1-Related Diseases. Every little action counts! 💙🙌
Brooklyn Simmons
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I'm so proud to support The RYR-1 Foundation and the amazing work they're doing for families in need! Let’s help spread the word and make a difference! 🌟✨
Brooklyn Simmons
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