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Speaker

Annie Kennedy

CHIEF OF POLICY AND ADVOCACY, EVERYLIFE FOUNDATION FOR RARE DISEASES
Washington, District of Columbia, United States
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’s work includes building strong partnerships with policy makers, federal agencies, Industry, and alliances. Current areas of emphasis include leading the national Burden of Rare Disease Study, 21st Century Cures Act and PDUFA VII engagement, national newborn screening program engagement and state RUSP alignment legislation, and innovating around therapy valuation and access issues.

Annie has served within the community for nearly three decades through her roles with Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA). In that time she helped lead legislative efforts around passage and implementation of the MD-CARE Act (2001, 2008, 2014), the Patient Focused Impact Assessment Act (PFIA) which became the Patient Experience Data provision within the 21st Century Cures Act (sec 3001), 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, the PFDD Works coalition, the Steering Committee of the Patient Driven Values in Healthcare Evaluation, Cures for Life, the FasterCures Patient Exchange Working Group, the National Health Council’s PCORI Valuation Group, National Health Council’s Medical Innovation Action Team, and recently served as a Design Team member of the NCATS/ORDR Tool Kit Project.
Speaking In
11:50 AM - 12:00 PM (EDT)
Wednesday, June 16

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization…

2:00 PM - 2:45 PM (EDT)
Wednesday, June 16

People living with a rare disease or condition not only face unique medical challenges in living…