The RYR-1 Foundation International Family Conferences
Overview
The the first ever Family Conference was held in July 2016, the second Family Conference in July 2018, and the third Family Conference in July 2022. Combined, these events have hosted over 550 attendees, representing 150 RYR-1-Related Diseases (RYR-1-RD) affected individuals and families from ten countries. These Family Conferences are unique opportunities for affected individuals and families to meet, form friendships, and develop a true RYR-1-RD community.
For a rare condition like RYR-1-RD, 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-RD community by hosting Family Conferences every other year.
For more information on Family Conferences, contact Lena Leghart.
