Annie Kennedy

Annie, Chief of Policy, Advocacy, and Patient Engagement at the EveryLife Foundation for Rare Diseases, has served within the community for nearly three decades through her roles with Parent Project Muscular Dystrophy, and the Muscular Dystrophy Association. In that time she helped lead legislative efforts around passage and implementation of the MD-CARE Act, the Patient Focused Impact Assessment Act which became the Patient Experience Data provision within the 21st Century Cures Act, engagement with the FDA and Industry around regulatory policy and therapeutic pipelines, led access efforts as the first therapies were approved in Duchenne, and engaged with ICER around the development of the modified framework for the valuation of ultra-rare diseases. Annie’s community roles include service on the Board of Directors of Cure SMA, PFDD Works coalition, Patient Driven Values in Healthcare Evaluation Steering Committee, FasterCures Cures for Life initiative, National Health Council’s PCORI Valuation Group, Innovation and Value Initiative Patient Advisory Committee, National Duchenne Newborn Screening Pilot Program Steering Committee, Institute for Gene Therapies Patient Advocacy Advisory Council, State Rare Disease Education Initiative National Steering Committee, and as a member of the NIH National Center for Advancing Translational Sciences Advisory Council and the Cures Accelerator Network Advisory Board.