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.
The RYR-1 Foundation International Family Conference 2025
July 24 – July 27, 2025
Hyatt Regency Pittsburgh International Airport
Pittsburgh, PA, USA
Registration for the International Family Conference 2025 is open! An “early bird” special discount is available for those who register before December 31, 2024 at 11:59 pm Pacific Standard Time.
New features for the 2025 Family Conference are: two full days instead of one, more opportunities to socialize during activities, new and additional session topics, panels with professionals and RYR-1-RD Community members, more opportunities to share personal experiences, a revamped Kids Club, and much more! Registration will close on June 30, 2024.
For details and more information on the 2025 Family Conference go to our registration website. We’re excited to meet and reconnect with the RYR-1-RD Community at the 2025 Family Conference!
We are looking for Kids Club volunteers! For more information go to the volunteer page on our registration website. If you are interested in volunteering for the Kids Club please review the document below.
Kids Club Volunteer Information
For more information on the Family Conference, contact Lena Leghart.
Become A Sponsor and Make A Difference!
Through the Family Conference Sponsorship Program, The RYR-1 Foundation offers an opportunity to organizations with shared interests to partner with us. As a sponsor of the Family Conference, your organization directly supports the work of The RYR-1 Foundation in providing advocacy and resources for the RYR-1-Related Diseases (RYR-1-RD) Community. Your organization also receives benefits that help you meet your goals, including joining a global community.
For more information on Sponsorship Opportunities, contact Patricia Raffaele.
