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.
FAMILY & FRIENDS
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.