RYR-1 International Family Conferences

The RYR-1 Foundation held the first ever RYR-1 International Family Conference in July 2016 and the second RYR-1 International Family Conference in July 2018. Combined, these events have hosted 388 attendees, representing 75 RYR-1-affected families from 31 states and eight countries. These conferences are unique opportunities for affected individuals and families to meet, form friendships, and develop a true RYR-1 community.

 

For a rare condition like RYR-1-related diseases, providing a forum for affected individuals and families to meet others like them has a significant psychological value. When an affected individual or their family members seek to find someone else who understands what they have experienced, a Family Conference becomes an invaluable and necessary resource. It is a goal of the Foundation to enhance and enrich these relationships within the RYR-1 community by hosting International Family Conferences every other year, with the next one scheduled for July 31-August 2, 2020.

For more on the 2020 RYR-1 International Family Conference, please click HERE.

For more on the 2018 RYR-1 International Family Conference, please click HERE.

For more on the 2016 RYR-1 International Family Conference, please click HERE.

Contact: 

P.O. Box 13312, Pittsburgh, PA 15243

© 2014 by The RYR-1 Foundation. 

Phone:

412-529-1482

The information provided by The RYR-1 Foundation on this site or by any links to this site is for educational purposes only. It should not be interpreted as a recommendation for a specific treatment plan, product, medical, or healthcare provider. Use of this web site does not replace medical consultations with a qualified professional to meet the individual’s needs. In addition, medical information can change rapidly; therefore, some information may be out of date, and/or contain inaccuracies or typographical errors. Ultimately, if you have concerns about your health, particularly RYR-1 related diseases, you should consult your health care provider.