Like our motto "strength in numbers" is the only way we can have a productive way to get to our goal of finding a cure which means you as the patient needs to be involved and up to date on the latest information, trials, and registered in our patient registry! The more patients that we know of with this disease the bigger difference we can make! 


As family and friends you can be a huge support to anyone who has RYR-1 muscle disease (myopathy). Please help increase the awareness of this disease and to help raise money to find a cure.


As a healthcare provider it's important to educate yourself on this disease and to increase awareness among the medical field/community. The more educated and aware that healthcare providers are the better chance we can help patients with diagnosis, treatment, research, and ultimately finding a cure.



P.O. Box 13312, Pittsburgh, PA 15243

© 2014 by The RYR-1 Foundation. 



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 In addition, medical information can change rapidly; therefore, some information may be out of date, and/or contain inaccuracies or typographical errors.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.