Sending Office: Honorable Gus M. Bilirakis
Sent By:

Dear Colleague:

By now your office should have received the invite below to a rare disease caucus briefing –
Wednesday, May 15th from 11:30-1:00pm in Dirksen G-11.  

For more information on this event and to RSVP, please contact
Shannon von Felden at


Gus M. Bilirakis


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


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 


Please RSVP for this briefing to Shannon von Felden, RDLA Program Manager, at

This briefing is a free and widely attended event.


Related Legislative Issues

Selected legislative information: HealthCare, Science

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