Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chairs: Representative Leonard Lance (R-NJ), Representative Joe Crowley (D-NY), Senator Orrin Hatch (R-UT), and Senator Amy Klobuchar (D-MN); and the Office of Senator Mark Kirk (R-IL) will host a briefing on:
The NIH and FDA: Vital Agencies in the Fight Against Rare Diseases
Wednesday, May 18th, 2016
2:00 pm – 3:00 pm
Senate Capitol Visitors Center Room 201, Washington, D.C., 20004
Moderator: Ellie Dehoney, Vice President of Policy and Advocacy, Research!America
- The Undiagnosed Disease Program at the NIH
- William Gahl, M.D., Ph.D, Clinical Director, National Human Genome Research Institute (invited)
- Precision Medicine – The White House & the NIH
- Matthew Might, Strategist, Executive Office of the President, The White House, Associate Professor, University of Utah, Associate Professor, Visiting, Harvard Medical School, Founder, NGLY1.org (invited)
- The Value of Patients to Clinical Innovation at the NIH
- Kayla Martinez & Dorelia Rivera, NOMID Patient
- The Role of NIH Funding in Kickstarting Biomedical Innovation
- Christopher C. Gibson, Ph.D, Co-Founder & CEO, Recursion Pharmaceuticals
Come and enjoy an array of refreshments or have coffee and snack break while learning about the role of our health agencies.