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. To download a one-page flyer for healthcare providers, please click HERE.
Additional CCG Resources
1) For an introduction to the Clinical Care Guidelines and a description of some of its unique features, please watch this brief video.
2) For additional videos and lectures related to information addressed in the CCG: