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)
  • “Patient Focused Drug Discovery” Kim McCleary, Director of Strategic Initiatives, FasterCures
  • Genetically Targeted Platform Technologies for Rare Diseases
  • 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


Briefing hosted by:

May-Caucus-Briefing-Logo-Mashup 2