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Annie Kennedy    

Chief of Policy and Advocacy, EveryLife Foundation for Rare Diseases

Annie Kennedy, currently serving as the Senior Vice President of Legislation and Public Policy at Parent Project Muscular Dystrophy, is dedicated to improving health outcomes for those living with Duchenne muscular dystrophy. Her role involves building robust partnerships with key stakeholders such as policymakers, federal agencies, industry leaders, and alliances to advance the priorities of the Duchenne community. Her current endeavors focus on the engagement around PDUFA VI/VII, the 21st Century Cures Act, the MD-CARE Act implementation, and liaising with the FDA and industry around regulatory policy and therapeutic pipelines.

In addition to her role at Parent Project Muscular Dystrophy, Kennedy sits on the Board of Directors of Cure SMA and serves on the Steering Committees of the 'Transition to Care' coalition and the Patient-Driven Values in Healthcare Valuation (PAVE). These positions further illustrate her deep involvement in initiatives aimed at improving health outcomes and policy for those living with rare diseases.

Moreover, Kennedy's active participation extends to the National Health Council's Valuation Work Group, the Caregivers Pathway Task Force, and the National Burden of Rare Disease Study Advisory Group. Her recent contribution as a Design Team member of the NCATS/ORDR Tool Kit Project and her service on the FasterCures Patients Count Leadership Council further underscores her commitment to driving positive change in health policy and care for those living with rare diseases. Her work and commitment showcase her understanding of the complex healthcare landscape and her ability to effectively communicate and advocate for important healthcare issues.

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