Rare Disease Week on Capitol Hill 2020

Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, will bring together over 800 patients, caregivers, and others 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 25-28, 2020, rare disease advocates will have an opportunity to meet with Members of Congress and to learn about policy updates and best practices for successful advocacy.

Rare Disease Week on Capitol Hill 2020 kicks off on February 25th with a Rare Disease Congressional Caucus lunch briefing followed by a documentary screening and cocktail reception in the evening.

Rare disease advocates will attend the all-day Legislative Conference on February 26th to learn about federal legislation and policies that affect the rare disease community. Policy experts from Capitol Hill, non-profit organizations, and industry will share their expertise with advocates. In addition, advocacy professionals will provide opportunities for participants to refine techniques for effective advocacy on the Hill and building strong relationships with their Members of Congress.

On February 27th, a Hill 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. Later in the evening, the Rare Artist Reception will feature the 2019 Rare Artist contest winning artwork and highlight the importance of art as therapy for rare disease patients.

We will close out the week at the National Institutes of Health (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.

In addition, the Food and Drug Administration (FDA) has announced a Rare Disease Day public meeting at the FDA White Oak Campus in Silver Spring, MD on Monday, February 24th.

Registration for Rare Disease Week on Capitol Hill begins on January 3, 2020. Information on Rare Disease Week on Capitol Hill 2020, the week’s events and locations, travel and hotel accommodations, 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.