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Panel: Families & Advocacy Groups
Advancing Rare Disease Research
Panelists:
Ilan Ganot
Founder, Solid Biosciences CEO, Alesta Therapeutics
Parent of a child who lives with Duchenne’s Muscular Dystrophy
Dr. Sharon Terry
Founding President and CEO, Genetic Alliance; President, EspeRare Foundation; Chair of Coalition for Genetic Fairness Founding Executive Director, PXE International
Parent of children who lives with pseudoxanthoma elasticum
Josh and Sarah Carter
Co-founders of The VEO-IBD Foundation
Parents of a child with Very Early Onset Inflammatory Bowel Disease (VEO-IBD)
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