Tue, Feb 28|
Rare Disease Week 2023
From February 28 - March 3, T.E.A.M. 4 Travis attended Rare Disease Week in Washington, DC.
Time & Location
Feb 28, 9:00 AM – Mar 02, 4:00 PM
Washington, U.S. Capitol Visitor Center, Washington, DC 20004, USA
About the Event
During Rare Disease Week, Travis' mom Allison joined over 600 rare disease advocates in Washington, DC. The National Institutes of Health (NIH) National Center for Advancing Translational Sciences is dedicated to supporting rare disease patients. The Everylife Foundation for Rare Diseases hosted the Legislative Conference, which provided a deep-dive into legislation impacting our community and prepared advocates to meet with members of Congress and their staffers. The week concluded with meetings on Capitol Hill, where Allison and other advocates discussed Congressional support for access to genetic counselors, the BENEFIT Act and rare disease appropriations for creation of more robust development of testing, research and clinical trials.