Who We Are

The RYR-1 Foundation is a non-profit, 501(c)(3) public charity, which was started by members of the Goldberg Family, who have been affected by an RYR-1-related disease.

Currently, there is no other organization that exists solely to advocate for and serve the needs of patients with RYR-1-related diseases. The goal of The RYR-1 Foundation is to fill this much-needed void.

Who We Help

The RYR-1 Foundation works closely with individuals and families affected by RYR-1-related diseases, researchers, biotech and pharmaceutical industries, and healthcare providers from across the globe to facilitate communication in the field of RYR-1-related diseases, fund research, advance effective therapies, and optimize standards of care to enhance the quality of life in affected individuals.

Clinical Care Guidelines

The Clinical Care Guidelines is a free, informative guide for individuals and families affected by RYR-1 with practical and easily understood information.


To download the Clinical Care Guidelines, please click:


Para descargar las Guías de Atención Clínica, haga click:

Phiên bản tiếng Việt

Để tải xuống Hướng dẫn Chăm sóc Lâm sàng, hãy nhấp vào:




Pour télécharger Lignes directrices en matière de soins cliniques, veuillez cliquer sur :

Deutsche Version

Um die Richtlinien für die klinische Versorgung herunterzuladen, bitte klicken:

النسخة العربية

لتنزيل إرشادات الرعاية السريرية
:من فضلك اضغط

Русская версия

Чтобы загрузить Руководство по оказанию клинической помощи, пожалуйста нажмите здесь:

Português (Brasil)

Para fazer o download das Diretrizes de Cuidados Clínicos, clique em:

Our Impact

All Around the World
$ 0 +
Million Dollars Raised
$ 0
Million Dollars in Funded Research Grants
RYR-1 International Family Conferences


Support Us

The RYR-1 Foundation is a non-profit, 501(c)(3), public charity--your donation is tax-deductible.

Host A Fundraiser

Thank you for your interest in raising funds to support The RYR-1 Foundation. Our success depends on the initiative of supporters like YOU.

How Your Donation Helps

How Your Donation Helps

Due to the support of our many generous benefactors, The RYR-1 Foundation’s work has led to important breakthroughs in scientific knowledge. In addition, The RYR-1 Foundation has formed a worldwide community of affected individuals who can find comfort and support in the knowledge that they are not alone and that our organization now exists to help them.

The need for treatments or a cure is urgent. With your support, The RYR-1 Foundation can continue to fund world-renowned scientists, expand the RYR-1 community, and make our slogan, “Strength in Numbers,” a reality.

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