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 2025 International Family Conference is now open!
This year, we’re excited to offer new features, including:
- Two full days of programming (up from one day)
- More opportunities to socialize with a variety of activities
- New session topics and panels featuring both professionals and members of the RYR-1-RD community
- Increased chances to share personal experiences
- A revamped Kids Club
- And much more!
Registration will close on June 30, 2024.
For more details and to register, visit our registration website. We can’t wait to connect with the RYR-1-RD community at the 2025 Family Conference!
We’re looking for Kids Club volunteers!
For more information, please visit the volunteer page on our registration website. If you’re interested in volunteering for the Kids Club, kindly review the document below.
2025 Kids Club Volunteer Information
Call for Panel Leaders: Get Involved in the 2025 Family Conference!
The Family Conference Planning Committee is organizing a variety of panel sessions for the 2025 Family Conference and is currently seeking panel leaders to moderate some of these sessions. We encourage RYR-1-RD affected individuals and families to get more involved, as sharing experiences around similar challenges can offer valuable solutions, motivate one another, and provide support.
Attendees will include a diverse group, such as:
- Individuals directly affected by RYR-1-RD (of all ages and various disease characteristics like CCD, MH, MMC, CNM, CFTD, etc.)
- Significant others, young adults, teens, grandparents, and other family members
- Healthcare providers, experts, and researchers who are eager to offer their insights and learn directly from the RYR-1-RD community
The Family Conferences provides an incredible opportunity to connect with others, share knowledge, and strengthen the RYR-1-RD community. We look forward to your involvement!
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.
2025 Family Conference Sponsorship Opportunities
Prior International Family Conferences
Introduction to The RYR-1 Foundation International Family Conferences
2025 Family Conference Sponsors
