Get Ready for Rare Disease Week on Capitol Hill 2019

Rare Disease Legislative Advocates (RDLA) will bring together over 500 patient advocates in Washington, DC for a week of events dedicated to empowering patients, families, friends, and healthcare professionals to become legislative advocates. During the week of February 24-28, 2019, advocates will have an opportunity to meet with Members of Congress and learn best practices for successful advocacy.

Rare Disease Week on Capitol Hill 2019 kicks off on February 24th with a documentary screening and cocktail reception.

Patient advocates will attend the all-day Legislative Conference on February 25th to learn about federal legislation and policies that affect the rare disease community. Policy experts from Capitol Hill and non-profit organizations will share their expertise with advocates. In addition, advocacy professionals will teach attendees how to be effective advocates on the Hill and build strong relationships with their Members of Congress.

On February 26th, a Lobby Day breakfast will be held with keynote speakers. After breakfast, 500 rare disease advocates will go to Capitol Hill to meet with their Senators, Representatives, and Congressional staffers to discuss key legislation, policies and the Rare Disease Congressional Caucus.

The next day, the Rare Disease Congressional Caucus will host rare disease advocates and Congressional staffers for a lunch briefing on February 27th. Later in the evening, the Rare Artist Reception will feature the 2018 Rare Artist contest winning artwork and highlight the importance of art as therapy for rare disease patients.

We will close out the week at NIH in Bethesda, Maryland. On February 28th, the NIH will host Rare Disease Day at NIH. This event aims to raise awareness about rare diseases, the people they affect, and NIH research collaborations to advance new treatments. The EveryLife Foundation will be there to meet patients and provide information on their programs as well.

RDLA offers travel stipends to participants to offset the cost of attending Rare Disease Week on Capitol Hill. Stipend awardees in Maryland and Virginia will receive $400, and awardees in the rest of the continental United States will receive $800. Stipend awardees in Alaska, Hawaii, and Puerto Rico will receive $1000.

Two stipends will be awarded per state and limited to one per family. Stipends are prioritized to have a diverse representation of rare diseases and for those who have not attended Rare Disease Week or received a stipend in the past. The 2019 travel stipend application is open until December 14th, 2018 and can be found at rareadvocates.org/rdw. Applicants will hear by December 21st whether they will receive a travel stipend or have been placed on the waiting list.

Registration for Rare Disease Week on Capitol Hill begins on January 3, 2019. A hotel room block has been organized at the Washington Court Hotel in Washington, DC between February 24th and 28th for $219 per night. Attendees can contact the Washington Court Hotel directly and make a reservation with the “EveryLife Foundation” room block to reserve with this rate.

Information on Rare Disease Week on Capitol Hill 2019, the travel stipend application, and registration for the event can be found at rareadvocates.org/rdw.

We are excited for this powerful week of events and to continue to advocate with the rare disease community.