Washington, DC – 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), this 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 rare disease or their advocacy experience level, all are welcome.
During Rare Disease Week, 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 2024 kicks off on Sunday, February 25th with Rare Disease Documentary Screening and Reception.
Participants will attend the full day Legislative Conference* on Monday, February 26th to learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build relationships with Members of Congress and congressional staff. The content is made accessible for both new and experienced advocates. *This event is required for advocates to attend Hill meetings.
“Hill meetings” will be taking place throughout the day of Tuesday, February 27th. Appointments are made for advocates with their Members of Congress and staff. These meetings allow advocates to put what they learned at the Legislative Conference to work, share their stories, and advocate for policy changes that matter most to them.
On Wednesday, February 28th, attendees will first meet at the Achieving Equity in Rare Disease Roundtable on Capitol Hill and after lunch will gather for the Rare Disease Congressional Caucus Briefing which convenes policy experts and rare disease stakeholders to educate Congressional Staff, the public, and advocates on issues of importance to the rare disease community. Wednesday’s event concludes with the Rare Artist Reception featuring winners from the Rare Artist contest exhibiting their art and sharing their stories with Members of Congress, Congressional staff, and advocates.
On Thursday, attendees can attend Rare Disease Day at NIH 2024 in Bethesda, Maryland. 2024 Rare disease week will wrap up with Rare Disease Day at FDA (a virtual event) held on Friday, March 1st.