Clinical Care Guidelines: What Patients & Families Need to Know About RYR-1-Related Diseases (CCG)

In November 2019, The RYR-1 Foundation was awarded a $50,000 grant from The Oscar and Elsa Mayer Family Foundation to produce a handbook for patients and families affected by RYR-1-related diseases. The difficulty with accessing reliable and easily comprehended information on these rare conditions is a tremendous source of frustration and anxiety for affected individuals and families. With this grant, The RYR-1 Foundation produced an informative guide with practical and easily understood information. The RYR-1 Foundation is incredibly grateful for the support from The Oscar and Elsa Mayer Family Foundation.

One-Page Flyer for Healthcare Providers



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:

Additional CCG Resources

For an introduction to the Clinical Care Guidelines and a description of some of its unique features, please watch the brief video to the right.

For additional videos and lectures related to information addressed in the Clinical Care Guidelines:

Click Here


This handbook was made possible

by a generous grant from The Oscar and Elsa Mayer Family Foundation

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