The RYR-1 Foundation International Family Conferences
Overview
The RYR-1 Foundation has hosted four Family Conferences to date, bringing together over 800 attendees, including 190 individuals and families affected by RYR-1-Related Diseases (RYR-1-RD) from twelve different countries. These events offer a unique opportunity for affected individuals and their families to connect, build lasting friendships, and foster a strong, supportive RYR-1-RD community.
For a rare condition like RYR-1-RD, the psychological impact of meeting others who truly understand the experience cannot be overstated. When individuals and families seek connection with others facing similar challenges, these Family Conferences become not just meaningful—but essential.
It is a key goal of The RYR-1 Foundation to strengthen these relationships by continuing to host Family Conferences, which are traditionally held every other summer.
For more information on Family Conferences, contact Lena Leghart.
