The RYR-1 Foundation is excited to announce the first ”RYR-1 International Family Conference 2016″ to be held July 22-24th, 2016 in Baltimore, Maryland, USA at the Hilton BWI Airport Hotel.
If you have muscle weakness from an RYR1 Myopathy such as CCD, MMC, CNM- this meeting is for YOU & YOUR Family Members- including children. Patient-focused lectures on RYR-1-related myopathy issues from world-renowned physicians and the leading RYR-1 scientists.
Opportunities and sessions to ask questions of the experts.
Updates on current and future RYR-1 clinical trials
A chance to network and meet other families coping with RYR-1 myopathy
A “Kids Club” room for fun and games and crafts during the sessions.
Suggestions and advice on how to raise a resilient kid with a physical disability and how to cope with the social & emotional issues of living with a physical disability.
All at a nice location near Washington DC & other historic sites, all meals included
Each Family member must register, including children.
This event is not sponsored by NORD. This event is being hosted by a NORD member organization.