RYR-1-Related Diseases International Research Workshops
2025 RYR-1-Related Diseases International Research Workshop
July 23 – July 24, 2025
Hyatt Regency Pittsburgh International Airport
Pittsburgh, PA, USA
The RYR-1 Foundation will be hosting its second Patient-Led International Research Workshop at the Hyatt Regency Pittsburgh International Airport. The Research Workshop will immediately precede The RYR-1 Foundation International Family Conference 2025.
The Research Workshop will bring together an international group of experts, researchers, medical professionals, trainees, and affected families focused on RYR-1-Related Diseases (RYR-1-RD) to share knowledge and exchange ideas.
2022 RYR-1-Related Diseases International Research Workshop: From Mechanisms to Treatments
July 21 – July 22, 2022
Hyatt Regency Pittsburgh International Airport
Pittsburgh, PA, USA
This was the first-ever patient-led international research workshop devoted exclusively to RYR-1-Related Diseases (RYR-1-RD), preceding the 2022 RYR-1 International Family Conference. With 45 in-person attendees and ten virtual attendees from 11 different countries, this workshop provided a much-needed forum for the leading international RYR-1-RD experts and a group of affected individuals to share knowledge, exchange ideas, form collaborations, and develop new strategies for finding therapies. The Workshop Co-Directors included a diverse group of researchers/clinicians in RYR-1-RD, members of The RYR-1 Foundation’s Scientific Advisory Board (SAB), and RYR-1-RD community representatives.
The RYR-1 Foundation is elated to report that the manuscript arising from this workshop has undergone editorial review and has now been published in the Journal of Neuromuscular Disease, the leading medical journal for neuromuscular disease. This important publication will serve to educate a worldwide audience on the current state of RYR-1-RD research, and clinical care. As important, this document will also serve to guide future research efforts to expedite the development of effective therapies.
Grant Recognition
The RYR-1 Foundation would like to thank the Muscular Dystrophy Association (MDA) and the National Institutes of Health (NIH) for their support of the 2022 RYR-1-Related Diseases International Research Workshop: From Mechanisms to Treatments. We are extremely grateful for the MDA’s and NIH’s grants to help us host this one-of-a-kind workshop. On behalf of all individuals and families affected by RYR-1-RD, The RYR-1 Foundation expresses our sincerest gratitude.
Funding for this conference was made possible (in part) by (1R13AR081619-01) from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade names, commercial practices, or organizations imply endorsement by the U.S. Government.
2022 RYR-1-Related Diseases International Research Workshop Gallery
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