Coordinating Comprehensive, Multidimensional Sickle Cell Disease Care in Africa
From fragmented efforts to integrated impact
Sickle cell disease (SCD) is one of Africa's most significant, yet neglected, public-health challenges. Many dedicated stakeholders across Africa are doing vital work — through screening programmes, treatment initiatives and community outreach. But significant challenges remain:
- Fragmented efforts operating in silos
- Fragile patient-care pathways
- Inconsistent and disconnected data systems
Now, there is a way forward.
people in Africa are living with SCD, accounting for 74% of the global SCD population.1
babies were born with SCD in 2021, primarily in sub-Saharan Africa.2
of children with SCD die before age 5 without coordinated care.3
The Imara approach: integration across existing health systems
In collaboration with like-minded partners, and thanks to a consensus of more than 35 experts across Kenya, Uganda and Côte d'Ivoire, the Imara Sickle Cell Framework was developed to provide a comprehensive, integrated approach to improve and manage SCD care in Africa.
Critically, the framework builds on existing systems and resources — community health workers, immunization programmes and hospitals — to strengthen the patient journey.
Imara also encourages public-private-donor partnerships to collaborate on policymaking, funding, supplies and scale-up — because no single organization can solve the SCD challenge alone.
The goal: progress for patients and population-level impact.
At a glance: the Imara Sickle Cell Framework
10 activities across all health-system levels of care.
Community engagement, early disease identification and early linkage to care.
- 1Community awareness
- 2Newborn, early-infant & family screening
- 3Sustainable linkage to care
Strengthening capacity for routine care while ensuring the availability of diagnostics, medicines and blood with local, trained professionals.
- 4Routine medical management
- 5Laboratory & imaging diagnostics
- 6Safe & adequate blood components
Strengthening capacity to provide specialized and complex care, leveraging trained healthcare specialists.
- 7Complication management (acute & chronic care)
Information systems to maximize patient management and public-health assessment, healthcare financing and overall programme management.
- 8SCD data management system
- 9Healthcare financing
- 10Programme management
Imara is the Swahili word for “firm” or “strong” — a fitting reflection of a commitment to strengthening health systems, building sustainable partnerships and empowering communities to change the trajectory of sickle cell disease. It also personifies the resilience of people living with SCD.
For more information on the Imara Sickle Cell Framework, please contact the Joint Clinical Research Centre (JCRC) at jcrc@jcrc.org.ug.
- Njuguna F, Kilach C, Njuguna C, et al. Building a comprehensive sickle cell disease program in Western Kenya: a decade of experience and growth. Ann Glob Health. 2026;92(1):7.
- World Health Organization. Sickle-cell disease. Published 6 August 2025. Accessed 8 June 2026. who.int/news-room/fact-sheets/detail/sickle-cell-disease.
- Uyoga S, Macharia AW, Mochamah G, et al. The epidemiology of sickle cell disease in children recruited in infancy in Kilifi, Kenya: a prospective cohort study. Lancet Glob Health. 2019;7(10):e1458–e1466.