Tue, Dec 04, 2018
12:00 PM - 1:00 PM

December 4th Rare Disease Congressional Caucus Briefing

Rare Disease Legislative Advocates with honorary co-hosts Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN), Co-Chairs of the Rare Disease Congressional Caucus, invite you to a lunch briefing:

The Diagnostic Odyssey

Tuesday, December 4, 2018, from 12:00 p.m. until 1:00 p.m.

Cannon House Office Building, Room 121

Complimentary lunch included

Registration available on-site


Moderator: Christina Hartman, Senior Director of Policy and Advocacy, EveryLife Foundation


Christina Frigo, Rare Disease Parent Advocate

Elizabeth Jalazo, MD, Pediatrician, Board Member, Angelman Syndrome Foundation, and Rare Disease Parent Advocate

Julie Sapp, ScM, CGC, Genetic Counselor, National Institutes of Health

Alan Beggs, PhD., Sir Edwin and Lady Manton Professor of Pediatrics, Harvard Medical School and Director of the Manton Center for Orphan Disease Research, Boston Children's Hospital


For questions about this briefing, please contact Shannon von Felden, RDLA Program Manager, at svonfelden@everylifefoundation.org 

Event Location

Cannon House Office Building, Room 121

Register for this event