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RYR-1 International Family Conference

July 22, 2016 @ 3:00 pm - July 24, 2016 @ 5:00 pm

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. 

Organizer

RYR-1 Foundation
Website:
http://www.ryr1.org/

Venue

Hilton Baltimore BWI
1739 West Nursery Road
Linthicum Heights, MD 21090 United States
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