December 5 – 6, 2024 Omni Los Angeles Hotel at California Plaza 251 South Olive Street Los Angeles, California, USA "We hope you will join us for SLC6A1 Connect’s 2024 International Scientific Symposium and Family Conference to be held on December 5-6, 2024 at the Omni Hotel in Los Angeles, CA, prior to the American …
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Join the LGS Community on December 5th before AES for a special showing of It’s All Your Fault, Tyler Price! - a new musical from Emmy winner Ben Decter (Lucifer) and Tony nominee Kristin Hanggi (Rock of Ages) raising awareness of #LennoxGastautSyndrome and #Epilepsy! The work will get a world premiere at the Hudson Theatre …
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EMPOWER CHANGE Your Voice Matters in Building a Rare Disease Advisory Council Join the coalition of rare disease patients, experts, and advocates like you to push lawmakers to create a Rare Disease Advisory Council (RDAC) in Vermont. Meet other rare disease community members in your state. Discuss the unique needs and challenges that the rare …
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EMPOWER CHANGE Your Voice Matters in Building a Rare Disease Advisory Council Join the coalition of rare disease patients, experts, and advocates like you to push lawmakers to create a Rare Disease Advisory Council (RDAC) in Vermont. Meet other rare disease community members in your state. Discuss the unique needs and challenges that the rare …
Continue reading "Vermont Rare Disease Advisory Council Coalition Meeting"
The RYR-1 Foundation is celebrating a decade of supporting individuals and families impacted by RYR-1-Related Diseases (RYR-1-RD). The organization holds International Family Conferences for the RYR-1-RD Community and the fourth Family Conference will be held July 24th - July 27, 2025, at the Hyatt Regency Pittsburgh International Airport, Pittsburgh, PA, U.S. More than 550 individuals …
Your donation will help more than 30 million Americans with a rare disease navigate their diagnosis, receive financial assistance, and access the care and support they deserve. Make your tax-deductible gift today!