Rare Disease Congressional Caucus Briefing - 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)
“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:

Ask your Members of Congress to Join the Caucus

It will only take 2 minutes: RDLA will automatically find your legislators for you. All you need to do is enter your address and add a personal note about why it’s important to you. If your legislator is already a member of the Caucus then you can send a thank you letter to your legislator instead.