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
