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Annie Kennedy  

Senior Vice President, Legislation & Public Policy, Parent Project Muscular Dystrophy

Focused on improving health outcomes for people living with Duchenne muscular dystrophy, Annie's work includes building strong partnerships with policy makers, federal agencies, Industry, and alliances that can serve as force multipliers in moving Duchenne community priorities forward. Current areas of emphasis include engagement around PDUFA VI/VII and the 21st Century Cures Act, MD-CARE Act implementation, engagement with the FDA and Industry around regulatory policy and therapeutic pipelines, launching a national newborn screening pilot program, developing resources for adults with Duchenne, optimizing clinical trial infrastructure, and innovating around therapy valuation and access issues. Annie currently serves on the Board of Directors of Cure SMA; on the Steering Committees of 'Transition to Care' coalition and the Patient-Driven Values in Healthcare Valuation (PAVE); as member of the National Health Council's Valuation Work Group, the Caregivers Pathway Task Force, and the National Burden of Rare Disease Study Advisory Group being led by the Every Life Foundation. Annie recently served as a Design Team member of the NCATS/ORDR Tool Kit Project and on the FasterCures Patients Count Leadership Council.


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