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Rare Disease Week on Capitol Hill

Tuesday, February 28, 20238:00 amThursday, March 2, 20235:00 pm

Now in its 12th year, Rare Disease Week on Capitol Hill empowers and inspires hundreds of advocates each year. The connections you make during the week will impact rare disease patients for generations to come.

Hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), the multi-day event brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress.

No matter one’s connection to a rare disease or their advocacy experience level, all are welcome.

NOTE: Rare Disease Week on Capitol Hill 2023 is an in-person event with some events accessible via live stream. Meetings with Members of Congress are in-person only.

Some Events:
• Young Adult Rare Representatives (YARR) Meetup
• Rare Disease Day at NIH
• Rare Disease Documentary Screening and Reception
• Rare Artist Virtual Gallery
• Hill Meetings