Wed, May 15, 2019
11:30 AM - 1:00 PM

May 15th Rare Disease Congressional Caucus Briefing

Rare Disease Legislative Advocates in cooperation with Representatives G. K. Butterfield (D-NC) and Gus Bilirakis (R-FL) and Senators Roger Wicker (R-MS) and Amy Klobuchar (D-MN), Co-Chairs of the Rare Disease Congressional Caucus, invite you to a Rare Disease lunch briefing:

New Technologies and Treatments for Rare Diseases

Wednesday, May 15, 2019, from 11:30 a.m. until 1:00 p.m.

Dirksen Senate Office Building, Room G-11

Complimentary lunch included

Registration available on-site 


Moderator: Daryl Pritchard, Ph.D., Senior Vice President of Science Policy, Personalized Medicine Coalition

George Church, Ph.D., Professor of Genetics, Harvard Medical School

Gary Gibbons, MD, Director, National Heart, Lung, and Blood Institute

Stan Nelson, MD, Duchenne Care Center, University of California Los Angeles

Tesha Samuels, Sickle Cell Disease advocate and participant in NIH clinical trial

For questions about this briefing, please contact Shannon von Felden, RDLA Program Manager, at

Register for this event