This free multi-day event, hosted by the Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases, brings together rare disease advocates from across the country to make their voices heard with their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate directly for policy change with their Members of Congress.
A number of DSF staff, board members, and community members will be there. If you’re attending and haven’t connected with us yet, email Shannon for meetup information.
Registration is open through February 5, 2026. You can find more details on the EveryLife Foundation website.