Annie Kennedy is Chief Mission Officer of the RARE Foundation. A veteran leader in the rare disease community, Annie joined the RARE Foundation in 2018, having previously held leadership roles at Parent Project Muscular Dystrophy and the Muscular Dystrophy Association where she led landmark legislative, regulatory, newborn screening, transitions, and access policy efforts including the MD CARE Act (2001, 2008, 2014), and the Patient Focused Impact Assessment Act, the Patient Experience Data provision of the 21st Century Cures Act.
Annie’s community roles have included service on the Board of Directors of Cure SMA, the National Duchenne NBS Steering Committee, and the NIH NCATS Advisory Council.
She currently serves on the Board of Directors of Patient Focused Medicine Development, as well as the TREAT-NMD Neuromuscular Network.
In 2024, Annie was named by Women We Admire as one of the Top 50 Leaders in Washington, DC.
