Clinical Care Guidelines

What Patients and Families Need to Know About RYR-1-Related Diseases

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. 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 the Clinical Care Guidelines, 

please click HERE or on any of the below screenshots.

To download a one-page flyer for healthcare providers, please click HERE.

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

Screenshots from the Clinical Care Guidelines

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Please note:

 

Throughout the Clinical Care Guidelines, there is text in red bold font. These items are hyperlinked to various chapters, graphics, and text throughout this document, as well as to additional outside resources. Please click on the items in this text to be redirected to additional resources within and outside of the Clinical Care Guidelines.

 

Most chapters begin with a table of terms that your doctors and/or providers may use. When these terms first appear within the chapter, they will be bold and italicized.

 

In addition, most chapters conclude with “Additional Resources” for the topics that have been addressed. To access these resources, simply click on the laptop image, the phone image, or the red bold link for more information.

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For additional resources, please click on the image above or visit:

www.ryr1.org/ccg-introduction

At the end of this handbook, there is an “Index” with important terms; page numbers where these terms appear are listed and are also hyperlinked.

Disclaimer, please read:

The information and advice published or made available in the “Clinical Care Guidelines” are not intended to replace the services of a physician, nor does it constitute a physician-patient relationship. It is for educational purposes only. This advice should be taken in conjunction with medical advice from your medical clinician whom you should consult in all matters relating to your health, in particular with respect to symptoms that may require diagnosis or medical attention. Any action on your part in response to the information provided in this booklet is at your own discretion. Ultimately, if you have concerns about your health, including RYR-1-related diseases, you should consult your healthcare provider.

Contact: 

P.O. Box 13312, Pittsburgh, PA 15243

© 2014 by The RYR-1 Foundation. 

Phone:

412-529-1482

The information provided by The RYR-1 Foundation on this site or by any links to this site is for educational purposes only. It should not be interpreted as a recommendation for a specific treatment plan, product, medical, or healthcare provider. Use of this web site does not replace medical consultations with a qualified professional to meet the individual’s needs. In addition, medical information can change rapidly; therefore, some information may be out of date, and/or contain inaccuracies or typographical errors. Ultimately, if you have concerns about your health, particularly RYR-1 related diseases, you should consult your health care provider.