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

Mashup

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

March 3rd, 2016 – The Rare Disease Ecosystem: Fostering Patient Engagement & Driving Biomedical Innovation

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

Nov 13th, 2014 – Creating Economic Incentives to Spur the Development of Treatments for Ebola and Other Life-Threatening Rare Diseases

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