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

Speakers:

  • 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

Patricia Furlong, Parent Project Muscular Dystrophy

Emil Kakkis, MD, PhD

Marina Cuchel, MD, PhD

Debra Lewis, OD, MBA

Paul Melmeyer, MPP

Seth Rotberg, Rare Disease Advocate

Thank you to our sponsors