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 significant psychological value. When an affected individual or their family members seek to find someone else who understands what they are experiencing, 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.