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.

Agenda:

  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.

 

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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
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