The RYR-1 Foundation, the only organization in the world that exists exclusively to serve the needs of and advocate for individuals with RYR-1-related diseases, will be hosting the third biennial RYR-1 International Family Conference in Pittsburgh, PA, USA at the Hyatt Regency Pittsburgh International Airport. The conference will take place on Friday, July 22, 2022 – Sunday, July 24, 2022. For more information and to register for the conference, please click here.

The RYR-1 Foundation held the first ever RYR-1 International Family Conference in July 2016 in Baltimore, MD and the second RYR-1 International Family Conference in July 2018 in Pittsburgh, PA. Combined, these events have hosted 388 attendees, representing 75 RYR-1-affected families from 31 states and eight countries. These conferences are unique opportunities for affected individuals and families to meet, learn from world-renowned experts, form friendships, and develop a genuine RYR-1 community.

For rare conditions like RYR-1-related diseases, providing a forum for affected individuals and families to meet others like them has a significant psychological value. When affected individuals or their family members seek others who understand 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.

RYR-1-related diseases include central core disease (CCD), centronuclear myopathy (CNM), multiminicore disease (MMD), malignant hyperthermia susceptibility (MHS), congenital fiber-type disproportion (CFTD), and other forms of muscle disease. To learn more about RYR-1-related diseases, please go to: www.ryr1.org/ccg.

“Patient outreach is one of the most important missions of The RYR-1 Foundation,” said Michael F. Goldberg, MD, MPH, President of The RYR-1 Foundation. “This can be done in a variety ways, including social media, but the RYR-1 International Family Conference is our signature event for individuals and families to meet each other and learn more about their condition. It also provides a forum for RYR-1 clinicians and scientists to network with each other, share the latest research, and meet affected individuals.”

The RYR-1 Foundation COVID-19 Vaccination Policy for the 2022 RYR-1 International Family Conference

The RYR-1 Foundation’s COVID-19 Vaccination Policy for the 2022 RYR-1 International Family Conference will be based on all current guidance from the Centers for Disease Control and Prevention (CDC), the state of Pennsylvania, the host venue, and The RYR-1 Foundation’s Scientific Advisory Board. Please note that the guidance and this policy are likely to change between now and the conference.

The RYR-1 Foundation recommends vaccinations for all eligible individuals, per CDC guidelines. All individuals will be asked to provide documentation of their vaccination at the time of online registration. If an individual is unable or unwilling to provide proof of vaccination, The RYR-1 Foundation will require those individuals to wear a mask during the Family Conference and related events. Unvaccinated attendees are also welcome to attend, but The RYR-1 Foundation will require unvaccinated individuals to wear a mask during the Family Conference and related events.

This policy has been approved by The RYR-1 Foundation’s Scientific Advisory Board and Board of Directors.

“While patient outreach is one of the most important missions of The RYR-1 Foundation, the wellbeing and safety of the entire RYR-1 community are our top priorities,” said Michael F. Goldberg, MD, MPH, President of The RYR-1 Foundation. “The RYR-1 International Family Conference is our signature event for individuals and families to meet each other and learn more about their condition. We want to ensure that we offer the safest environment for all attendees.”

About The RYR-1 Foundation

The Pittsburgh, Pennsylvania-based 501(c)(3) public charity was launched in October 2014 by members of the Goldberg family, who have been affected by an RYR-1-related disease. It is currently the only organization that exists solely to advocate for and serve the needs of patients with RYR-1-related diseases, the most common causes of congenital myopathy. The mission of the RYR-1 Foundation is to support research leading to effective treatment or a cure for RYR-1-related diseases, to educate physicians about these diseases, and to provide patient/family support and advocacy.