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 – 3:00 PM
Location: United States Senate Capitol Visitor Center, Room 201
Washington, DC 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
- Precision Medicine – The White House & the FDA
- 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
- The Importance of the FDA Orphan Products Grant Program
- Marina Cuchel, M.D., Ph.D, Research Associate Professor, Perelman School of Medicine at the University of Pennsylvania
- 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
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.
Caucus Briefings:
September 14th, 2016 – Strengthening Medical Innovation in America for Rare Disease Patients
May 18th, 2016 – The NIH and FDA: Vital Agencies in the Fight Against Rare Diseases
Nov. 5th, 2015 – Precision Medicine: New Frontiers for Rare Diseases
May 21st, 2015 – 21st Century Cures Initiative: Priorities for the Rare Disease Community
Feb. 26th, 2015 – Urgent Healthcare Policy Needs of the Rare Disease Community
Sept. 17th, 2014 – Implementation of Rare Disease Provisions in FDASIA
May 7th, 2014 – Access to Care & Therapies in the New Healthcare System: A Rare Disease Perspective
Feb. 28th, 2014 – Science Behind Rare Disease Policy, Feat. Special Guest Jonny Lee Miller