Welcome to the Sickle Cell Disease Association of America Inc.’s Sickle Cell Disease Educational Information Repository (SCD Repository) which was designed to provide an up-to-date directory of disease education, information and resources.

The SCD Repository was developed as a product of the HRSA-funded Sickle Cell Disease Newborn Screening Follow-up Program (SCDNBSFP) which is comprised of sixteen (16) community-based organization (CBO) partnerships. The SCDNBSFP provides recruitment, care coordination, education and outreach to individuals living with sickle cell disease and their families.

It is our hope that the SCD Repository will help you understand SCD risk factors, signs, symptoms, treatment options and more. We invite you to explore the site now to get the information you need. To learn more about the mission and work of SCDAA, please visit: www.sicklecelldisease.org

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Agencies of Support

  • Sickle Cell Disease Association of America, Inc. (SCDAA)
  • Centers for Disease Control and Prevention (CDC)
  • Maternal and Child Health Bureau (MCHB)
  • National Heart, Lung, and Blood Institute (NHLBI)
  • Health Resources & Services Administration (HRSA)

Data & Statistics

It is estimated that:

  • Sickle Cell Disease (SCD) affects approximately 100,000 Americans.
  • SCD occurs in 1 out of every 365 Black or African-American births.
  • SCD occurs among 1 out of every 16,300 Hispanic-American births.
  • 1 in 13 Black or African-American babies born with sickle cell trait (SCT).

Source: Centers for Disease Control and Prevention, 2018



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