2020 RYR-1 Foundation International Family Conference

July 31 - August 2, 2020

Hilton Orlando Bonnet Creek

Orlando, FL, USA

Summary

Purpose: The RYR-1 International Family Conference gives individuals affected by RYR-1-related diseases and their family members the opportunity to meet one another and learn more about this rare medical condition. This conference 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 adults living with RYR-1-related diseases face. 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 for individuals and families affected by RYR-1-related diseases, specifically congenital myopathies (e.g. CCD, MMC, CFTD, CNM, Malignant Hyperthermia, etc.). 

A Kids Club & Teen Club will be provided for children ages 4-17.

Space is limited, everyone is encouraged to register TODAY!

Please note: the Orlando International Airport (MCO) is approximately 30 minutes away from the Hilton Orlando Bonnet Creek (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 31, 2020:
- Check-in starting at 8:00 am
- Kick-off to begin at 12:00 pm

 Saturday, August 1, 2020:
- General session starting at 8:00 am

Sunday, August 2, 2020:
- General session starting at 8:30 am
- General session ending at 4:00 pm
  

WHERE: 

Hilton Orlando Bonnet Creek

14100 Bonnet Creek Resort Lane
Orlando, FL 32821
USA
(407) 597-3600

 

SPONSORS:


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