Rare Disease Week on Capitol Hill
Time & Location
About the Event
We're looking forward to a safe return to in-person meetings with this important conference hosted by Everylife Foundation and RDLA (Rare Disease Legislative Advocates). With Travis' mom and our founder Allison serving on RDLA's Advisory Committee, she'll provide valuable insight to first-timers on how to effectively tell their rare disease story and build relationships with members of Congress.
We're excited to be able to join other patients, families, advocates, industry partners and medical providers and researchers. As we say, "Alone We Are Rare, Together We Are Strong".
Some schedule highlights according to Everylife Foundation include:
Monday July 19th
11th Annual Rare Disease Documentary Screening and Reception at the Ronald Reagan International Trade Center A unique event with a film screening and stakeholder panel discussion following a welcome reception.
Tuesday, July 20th Legislative Conference at the Ronald Reagan International Trade Center The event helps advocates learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build relationships with Members of Congress and staff.
YARR Meetup The Young Adult Representatives of RDLA (YARR) will gather following the Legislative Conference to discuss the day’s events. YARR is a highly motivated group of 16-30 years-olds who are building the next generation of rare disease advocates.
Wednesday, July 21st Hill Day Launch Pads Advocates will launch their Hill Day from a banquet room on the House or Senate side for breakfast, networking with their state teams, and receiving updates on their scheduled meetings.
Hill Day Visits Advocates put what they learned at the Legislative Conference to work with meetings scheduled for them with Members of Congress and Staff.
Thursday, July 22nd Rare Disease Congressional Caucus Briefing Convenes policy experts and rare disease stakeholders to educate Congressional staff, the public, and advocates on issues of importance to the rare disease community.
Diversity Caucus Roundtables The EveryLife Foundation will partner with the Congressional Black Caucus, Hispanic Caucus, Asian and Pacific Islander Caucus, and the LGBT Equality Caucus to host series of roundtables for patient advocates, industry leaders, and community stakeholders to discuss perspectives and emerging focused on raising the profile of underserved rare disease communities.
Rare Artist Reception on Capitol Hill Awardees from our Rare Artist Contest exhibit their art and share their rare disease experience with Members of Congress, Congressional staff and advocates.