Annie Kennedy | Chief of Policy, Advocacy, & Patient Engagement
Everylife Foundation for Rare Diseases

A veteran leader in the rare disease patient focused drug development movement, Annie joined the EveryLife Foundation in 2018, where she’s led numerous, community-driven evidence development efforts including the National Economic Burden of Rare Disease study, The Guide to Patient Involvement in Rare Disease Therapy Development, and advocacy efforts leading to the establishment of FDA’s Rare Disease Innovation Hub. Annie previously held leadership roles at Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA) where she led landmark legislative, regulatory, newborn screening, transitions, and access policy efforts including the MD CARE Act, and the Patient Focused Impact Assessment Act (PFIA), which became the Patient Experience Data provision of the 21st Century Cures Act.   Annie’s community roles have included service on the Board of Directors of Patient Focused Medicines Development, the Board of Directors of Cure SMA, the National Duchenne Newborn Screening Steering Committee, the NIH Strategic Planning Working Group on Engaging the Public as Partners in Clinical Research, and as a member of the NIH NCATS Advisory Council.