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2018 RYR-1 International
Family Conference
Click HERE to register now!

Group photo 1

July 13 - July 15, 2018
Pittsburgh, PA

Discounts for early registration! Space is limited.
Do not miss out on this biennial event!

Summary

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.

Topics (Formal Agenda to be announced soon): - What is RYR-1 myopathy? - Genetics of RYR-1/How to interpret your genetic results - The role of calcium in RYR-1 - Potential treatments for RYR-1 - Clinical trials - Malignant hyperthermia - Financial and legal advice for individuals with disabilities - Making your home handicap accessible - Individualized education plans - Social and emotional issues related to RYR-1 - Dating and intimacy issues

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! You will receive a discount for early registration (before Dec 31st). 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 nicole@ryr1.org if you need to cancel your registration)

Details

WHEN: 

Friday, July 13, 2018:
- Check-in starting at 9:00 am
- Conference sessions and kick-off to begin at noontime

Saturday, July 14, 2018:
- General session starting at 9:00 am

Sunday, July 13, 2018:
- General session starting at 9:00 am

  

WHERE: 

Pittsburgh Marriott City Center
112 Washington Pl
Pittsburgh, PA 15219
USA
(412) 471-4000

SPONSOR:

The RYR-1 Foundation

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