Sickle cell advocacy organizations in Africa

Sickle cell advocacy organizations in Africa are non-governmental organizations, patient groups, charitable foundations, and research networks that promote awareness, prevention, treatment, and policy development related to sickle cell disease (SCD) across the African continent.Piel FB, Steinberg MH, Rees DC. "Sickle Cell Disease." New England Journal of Medicine. 2017;376(16):1561–1573. doi:10.1056/NEJMra1510865.

Background

Africa bears the largest global burden of sickle cell disease, accounting for most affected births worldwide.Piel FB, Patil AP, Howes RE, et al. "Global epidemiology of sickle haemoglobin in neonates." Nature Communications. 2013;4:1048. doi:10.1038/ncomms2044.

The disease is particularly prevalent in sub-Saharan Africa, where advocacy organizations have emerged to improve public awareness, healthcare access, and research collaboration.

Regional organizations

Africa Sickle Cell Alliance

The Africa Sickle Cell Alliance (ASA) is a pan-African network of patient groups, healthcare professionals, caregivers, and advocacy organizations working to improve policies and healthcare services for people living with sickle cell disease across Africa.

SickleInAfrica

SickleInAfrica is a pan-African research consortium that coordinates collaborative research and clinical programs on sickle cell disease. The initiative includes the Sickle Pan-African Research Consortium (SPARCO) and the Sickle Africa Data Coordinating Center (SADaCC).Makani J, Tshilolo L, Wonkam A, et al. "SickleInAfrica." The Lancet Haematology. 2020;7(2):e98–e99. doi:10.1016/S2352-3026(19)30262-4.

National organizations

Sickle Cell Foundation Nigeria

The Sickle Cell Foundation Nigeria (SCFN) is a non-profit organization based in Lagos, Nigeria, providing advocacy, screening, counseling, and patient support services.

Sickle Cell Advocacy and Management Initiative

The Sickle Cell Advocacy and Management Initiative (SAMI) supports individuals living with sickle cell disease through awareness campaigns, counseling, and community outreach.

Sickle Cell Hope Alive Foundation

The Sickle Cell Hope Alive Foundation (SCHAF) is a Nigerian non-profit organization focused on patient support, public awareness, and community screening programs.

Sickle Cell Support Society of Nigeria

The Sickle Cell Support Society of Nigeria (SCSN) promotes awareness and improved standards of care for sickle cell disease in Nigeria.

References