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Rare Disease Week

Home / Policy & Legislation / Rare Disease Week

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WHO WE WORKED WITH: We worked with the EveryLife Foundation (EveryLife) and the National Organization for Rare Disorders (NORD). EveryLife hosted Rare Disease Week on Capitol Hill in February.

WHAT WE DID: In 2018, Sick Cells worked with SCD volunteers to recruit and prepare over 40 SCD patient advocates who came to Washington, DC and lobbied for rare disease and sickle cell disease legislation. Sick Cells became active in rare disease week during 2018.

WHAT ELSE WE DID: On Rare Disease Day (February 28) Sick Cells attend a lobby day in IL hosted by NORD. While there, Sick Cells educated state legislators about funding gaps in IL for sickle cell patients. The team discussed with IL senators the prevalence of SCD in the state and the need for visibility at the state level. Since 2018, sickle cell disease has had a strong representation during Rare Disease Week.

ANOTHER RESULT: As a result of this work, Sick Cells’ President and Co-Founder, Ashley Valentine, was nominated for the EveryLife Foundation’s Rare Voice Award in patient advocacy at the State Level in 2018 and 2019. Sick Cells became official NORD members in 2018 and the first sickle cell disease advocacy nonprofit to join.

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