21st Century Cures Initiative: Priorities for the Rare Disease Community
Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chairs:
Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), will host a briefing on:
21st Century Cures Initiative: Priorities for the Rare Disease Community
Thursday May 21, 2015
12:30 pm – 1:30 pm (lunch provided)
Rayburn House Office Building
Room: B318
- Dormant Therapies and MODDERN Cures Act, Rep. Leonard Lance (R-NJ)
- Orphan Product Extensions Now, Accelerating Cures & Treatments (OPEN ACT), Rep. Gus Bilirakis (R-FL)
- Overview and Outlook for 21st Century Cures, Steve Usdin, Senior Editor, BioCentury Publications
- Patient Focused Drug Discovery, Kim McCleary, Director of Strategic Initiatives, FasterCures
- Expanding Hope Act/Pediatric Priority Review Voucher, Nancy Goodman, Executive Director, Kids V. Cancer
- Rare Disease Patient Organization Perspective, NORD
- NIH Funding Provisions, Ellie Dehoney, Vice President of Policy & Advocacy, Research!America
Moderator: Max G. Bronstein, Senior Director, Public & Goverment Affairs, EveryLife Foundation for Rare Diseases
Max G. Bronstein, MPP
Senior Director, Public & Government Relations
Phone: 415-884-0223
EVERYLIFE FOUNDATION FOR RARE DISEASES
Accelerating Biotech Innovation for Rare Disease Treatments
Take Action Now – ask your representative to co-sponsor the OPEN ACT HR 971 to help bring treatments to rare disease patients!