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North Carolina Sickle Cell Syndrome Program

Providing Hope for a Brighter Future


September is National Sickle Cell Awareness Month

National and State Estimated Statistics

  • It is estimated that 90,000 to 100,000 persons have sickle cell disease in the US.1
  • It is estimated that more than two million people have sickle cell trait, which occurs in about 1 in 12 African Americans.2
  • Each year in NC about 120 infants are born with sickle cell disease and 4,000 infants are born with sickle cell trait or related trait.3

1. Centers for Disease Control and Prevention, 2014. Sickle Cell Disease Data & Statistics. Available at http://www.cdc.gov/NCBDDD/sicklecell/data.html

2. National Heart, Lung, and Blood Institute. 2009. Disease and conditions index. Sickle cell anemia: Who is at risk? Department of Health  and Human Services. Available at http://www.nhlbi.nih.gov/health/dci/Diseases/Sca/SCA_WhoIsAtRisk.html

3. NC Department of Health and Health Service, Division of Public Health, Sickle Cell Syndrome Program. 2015. WCSWeb Database System.

Activities: Regional Sickle Cell Conference

The NC Sickle Cell Syndrome Program, in partnership with Piedmont Health Services and Sickle Cell Agency, held a regional client conference on Saturday, August 19, 2017 at Union Square Campus in Greensboro, NC. The purpose of the event was to empower and educate clients and families living with sickle cell disease in advance of National Sickle Cell Awareness Month observed in September. Key conference topics covered by medical providers included Management of Sickle Cell Disease, Opioid Use, Sickle Cell Research and Effective Ways to Communicate with Providers. Special highlights of the conference included a panel discussion entitled “Staying Positive and Living with Sickle Cell Disease” and musical entertainment (violin, flute and African dance) provided by clients served by Piedmont Health Services and Sickle Cell Agency.

Additional Information

For more information about sickle cell disease please contact the NCSCSP at 919-707-5700 or 1-866-NC-SCELL.


NC Sickle Cell Syndrome Program Logo The North Carolina Sickle Cell Syndrome Program was established in 1973. The program is part of the Department of Health and Human Services > Division of Public Health > Women's and Children's Health Section > Women's Health Branch.

The mission of the NC Sickle Cell Syndrome Program is to promote the health and well-being of persons with sickle cell disease through the reduction of morbidity and mortality and the heightened awareness of the disease and its complications. The program provides comprehensive services to individuals and their families affected by sickle cell disease and other hemoglobin disorders, and offers genetic counseling and education to the general public. Through the implementation of a systematic, statewide approach to service delivery, the program provides infants, children, adolescents and adults affected by sickle cell disease with newborn screening follow up, care coordination, referrals to clinical and related services, and sickle cell educational materials and information.

The North Carolina Sickle Cell Syndrome Program is committed to providing quality care and services through its network of Regional Sickle Cell Educator Counselors, comprehensive medical centers and community-based organizations. The program works closely with the Governor’s appointed Council on Sickle Cell Syndrome to address the changing needs and issues of the sickle cell community. By working together, these organizations "Bring Hope and a Brighter Future" to persons living with sickle cell disease and their families.

Organizational Information

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