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
Complimentary lunch included
- 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
This is a free and widely attended public event. For questions about this briefing, please contact Shannon von Felden, RDLA Program Manager, at firstname.lastname@example.org.
Thank you to our sponsors