📞 Livestream the Rare Disease Congressional Caucus Briefing December 4th

For those who can not make it to Washington, DC next week, we’re pleased to announce a livestream will be available for the Rare Disease Congressional Caucus briefing.

Rare Disease Legislative Advocates with honorary co-hosts Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN), Co-Chairs of the Rare Disease Congressional Caucus, invite you to a lunch briefing:

The Diagnostic Odyssey

Tuesday, December 4, 2018, from 12:00 p.m. until 1:00 p.m.

121 Cannon House Office Building

Complimentary lunch included

Registration available on-site

Register for the event livestream by clicking this link.

 

If you have questions about the briefing, please email Shannon von Felden, RDLA Program Manager, at svonfelden@everylifefoundation.org.

RDLA’s May Legislative In-Person Meeting

RDLA Congressional Caucus

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

   REGISTER   

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.