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.