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. Annie has served within the community for nearly three decades through her roles with the EveryLife Foundation, 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. Since joining EveryLife in 2018, Annie has led the National Economic Burden of Rare Disease study, the development of the ICD Code Roadmap, the broad community collaboration to develop the Guide to Patient Involvement in Rare Disease Therapy Involvement, organization engagement in PDUFA VII, community advocacy for the Speeding Therapy Access Today Act (STAT Act), and federal and state newborn screening efforts. Annie’s community roles include service on the Board of Directors of Cure SMA, the Patient Driven Values in Healthcare Evaluation (PAVE) Steering Committee, the Patient Centered- Core Impact Set (PC-CIS) Steering Committee, the National Health Council’s PCORI Valuation Group, the Innovation and Value Initiative (IVI) Patient Advisory Committee, the National Duchenne Newborn Screening Pilot Steering Committee, the Institute for Gene Therapies (IGT) Patient Advocacy Advisory Council, a co-lead with IVI Engaging Patients with Rare Disease in Identifying Meaningful Approaches to CER and Value Assessment (PCORI award), and as a member of the NIH National Center for Advancing Translational Sciences (NCATS) Advisory Council.