Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chair Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN) invite you to a lunch briefing:

35 Years Later: The Orphan Drug Act
Wednesday, September 12, 2018, from 12:00 p.m. until 1:00 p.m.
Dirksen Senate Office Building, Room SD-215


  • Patricia Furlong, Parent Project Muscular Dystrophy (moderator)
  • Emil Kakkis, MD, PhD, Founder, EveryLife Foundation and CEO and President, Ultragenyx Pharmaceutical Inc.
  • Debra Lewis, OD, MBA, Acting Director, Office of Orphan Products Development, US Food and Drug Administration
  • Paul Melmeyer, MPP, Director of Federal Policy, National Organization for Rare Disorders
  • Marina Cuchel, MD, PhD, Research Associate Professor of Medicine, University of Pennsylvania
  • Seth Rotberg, Rare Disease Advocate

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