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2018 RYR-1 International
Family Conference

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July 13 - July 15, 2018
Pittsburgh, PA


Purpose: The conference gives RYR-1 affected individuals (of all age ranges 2 to 78) and their family members the opportunity to meet one another and learn more about this rare medical condition. This meeting will provide information on the latest research being done and offer educational seminars on various informative topics for both parents of affected children as well as issues facing adults living with RYR-1 congenital myopathies. It is our hope that it will also provide strategies for dealing with the various emotional and social challenges as well.

Who should attend? This meeting is solely for individuals and families affected by RYR-1-related conditions, specifically congenital myopathies (e.g. CCD, MMC, CFTD, CNM, etc). While the focus of the meeting will be on the RYR-1 myopathies, a lecture/discussion related to malignant hyperthermia will be covered.

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A Kids Club will be provided for children ages 4-12. A space for a Teen Club will be available for youth ages 13-17.

Space is limited, everyone is encouraged to register TODAY! We encourage everyone to arrive a day early.

Please note: the Pittsburgh International Airport (PIT) is approximately 35 minutes away

from the Pittsburgh Marriott City Center (location of the conference).


 (Unfortunately, at this time, we are unable to provide any form of financial aid for registration fees, hotel reservations, and/or transportation. Registration fees are non-refundable. Please contact if you need to cancel your registration)



Friday, July 13, 2018:
- Check-in starting at 9:00 am
- Kick-off to begin at 4:00 pm

 Saturday, July 14, 2018:

- General session starting at 8:00 am

Sunday, July 13, 2018:
- General session starting at 8:30 am



Pittsburgh MarriottCity Center

112 Washington Pl
Pittsburgh, PA 15219
(412) 471-4000


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