Welcome to the
Sickle Cell Disease
Association of America, Inc.

We serve as the national voice for sickle cell disease working to resolve issues surrounding this rare disease and sickle cell trait. Since 1972, our organization has been on the forefront of improving the quality of health, life and services for individuals, families and communities affected by this rare disease and related conditions. Our 50+ member organizations span 31 states.

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  • Sickle Cell News

  • SCD Advocacy Update: March 2026

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  • MedicAlert Foundation, SCDAA & Fulcrum Therapeutics Partner

    MedicAlert Foundation, the leading nonprofit providing medical IDs and emergency medical information services, Sickle Cell Disease Association of America, Inc., (SCDAA), the national voice for people affected by sickle cell disease and their caregivers, and.....

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  • In Remembrance of KiKi Shepard

    The Sickle Cell Disease Association of America, Inc. (SCDAA) mourns the loss of KiKi Shepard, an actress and dedicated sickle cell advocate, who passed away recently at the age of 74. Many knew KiKi as.....

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  • Fulcrum Therapeutics to Host Congressional Briefing

    Fulcrum Therapeutics will host a briefing to bring together clinicians, patient advocates, researchers and policy leaders for a moderated panel discussion on the current treatment landscape for sickle cell disease and what Congress can do.....

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Data & Statistics

300,000+

Babies born internationally each year with SCD

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1 in 13

African-Americans have Sickle Cell Trait (SCT)

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100,000

People in the United States have sickle cell disease (SCD)

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1 in 350

Black Americans have sickle cell disease (SCD)

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  • National Program Initiatives

  • SCD C.A.R.E.S. Consortium

    The mission of this initiative is to raise awareness about the importance of clinical trials and why it’s beneficial for sickle cell warriors to participate in them.

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  • Advocacy

    Sickle Cell Disease Association of America, Inc. (SCDAA) actively works with legislators and regulators at both the state and federal levels to advance SCD policies.

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  • Community Health Worker Training

    If you have a passion for community health or you have been personally affected by SCD, SCDAA encourages you to apply for community health worker (CHW) training.

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Find A Member Organization Near You:

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