Rare Disease Week in Washington DC
This 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 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.
Our Impact since our inception...
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Dollars Raised
Over 12,000,000 dollars for research!