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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 rare disease or their advocacy experience level, all are welcome.
FEBRUARY 28TH – MARCH 2ND, 2023
This event has ended.
people & placesThe Sickle Cell Foundation of TennesseeThe Sickle Cell Foundation of Tennessee ...
people & placesSickle Cell Anemia Association of QuebecThe Sickle Cell Association of Quebec is...
education & researchMedicaid and CHIP Sickle Cell Disease Report, T-MSIS Analytic Files (TAF) 2017Sickle cell disease (SCD), the most prev...
people & placesVelvet Brown-WattsVelvet L. Brown-Watts, is the Founder-...
news & eventsRare Diseases and Orphan Products Breakthrough SummitEach year, the NORD Summit, one of the l...
Community CenterA Sickle Cell Warrior Survival Story— Timi Edwin“When I was 10, I was flogged by a tea...
people & placesDebra FigginsDebra Figgins is a Sickle Cell Educator....
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.