RYR-1 International Family Conferences
The RYR-1 Foundation held the first ever RYR-1 International Family Conference in July 2016, the second RYR-1 International Family Conference in July 2018, and the third RYR-1 International Family Conference in July 2022. Combined, these events have hosted over 550 attendees, representing 150 RYR-1-affected families from ten 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 RYR-1 Foundation to enhance and enrich these relationships within the RYR-1 community by hosting International Family Conferences every other year.