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Innovation for Healthier Americans: Priorities for the Rare Disease Community

Thursday October 8th, 2015
12:00pm1:00pm (lunch provided)

Dirksen Senate Building Room 106

  • Overview and Outlook for Innovation for Healthier Americans, Max Bronstein, Senior Director, Advocacy & Science Policy, EveryLife Foundation for Rare Diseases
  • Patient Focused Impact Assessment Act, Ryan Fischer, Senior Vice President of Community Engagement, Parent Project Muscular Dystrophy
  • Expanding Hope Act/Pediatric Priority Review Voucher, Office of Sen. Bob Casey (invited)
  • NIH & FDA Funding Provisions, Ellie Dehoney, Vice President of Policy & Advocacy, Research!America
  • Dormant Therapies Act, Steve Gibson, Chief Mission Strategy & Public Policy Officer, ALS Association
  • Orphan Product Extensions Now – Accelerating Cures & Treatments S. 1421 (OPEN ACT), Matthew Richardson, Legislative Staff, Office of Senator Orrin Hatch
  • Advancing Targeted Therapies for Rare Diseases Act S. 2030, Paul Melmeyer, Associate Director of Public Policy, National Organization for Rare Disorders

Limited Seating, RSVP here to attend

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