Reminder: Today is RDLA’s Webinar Legislative Meeting, Rare Disease Caucus Briefing Takes Place May 18th

May 17, 2016

RDLA’s May Legislative Webinar & In-Person Meeting

Wednesday, May 17th: 1:00 pm to 2:00 pm EST 

1101 14th St. NW Suite 700 Washington, DC 20005-5601

Click ‘register’ below to RSVP and receive the call in number and webinar info:

Register here.


  1. AB 2752 (California) Continuity of Care: Jerry Jaffe, Public Policy Director, California Chronic Care Coalition
  2. KIDS Act: Nancy Goodman, Executive Director, Kids v Cancer
  3. SB 1095 (California) Newborn Screening: Vignesh Ganapathy, Manager of Advocacy and Government Relations, EveryLife Foundation
  4. Capitol Hill Update: Max Bronstein, Senior Director of Advocacy and Science Policy, EveryLife Foundation

Once a month RDLA convenes in person and/or over the phone to discuss legislation and developments that affect the rare disease community. The meeting/conference calls are essentially a clearing house for legislation and participation does not imply support for any of the policy proposals or legislation that are discussed or promoted.



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, (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

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