Focused on improving health outcomes for people living with rare diseases by advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy, Annie Kennedy serves as the Chief of Policy, Advocacy and Patient Engagement for the EveryLife Foundation for Rare Diseases. Her role includes building partnerships with policy makers, federal agencies, Industry, and alliances. Annie has served within the community for nearly three decades through her roles with the EveryLife Foundation, Parent Project Muscular Dystrophy and the Muscular Dystrophy Association, and has helped lead legislative efforts around passage and implementation of the MD-CARE Act and the Patient Focused Impact Assessment Act. Annie’s community roles include service on the Board of Directors of Cure SMA, the Patient Driven Values in Healthcare Evaluation Steering Committee, the Patient Centered- Core Impact Set Steering Committee, the National Health Council’s PCORI Valuation Group, the Innovation and Value Initiative Patient Advisory Committee, the National Duchenne Newborn Screening Pilot Steering Committee, the Institute for Gene Therapies Patient Advocacy Advisory Council, and as a member of the NIH National Center for Advancing Translational Sciences Advisory Council and the Cures Accelerator Network Advisory Board.