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
The information and advice published or made available in the Clinical Care Guidelines are not intended to replace the services of a physician.
Pour télécharger Lignes directrices en matière de soins cliniques, veuillez cliquer sur :
Um die Richtlinien für die klinische Versorgung herunterzuladen, bitte klicken:
Чтобы загрузить Руководство по оказанию клинической помощи, пожалуйста нажмите здесь:
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:
OUR FUNDER
This handbook was made possible
by a generous grant from The Oscar and Elsa Mayer Family Foundation
