Support for the assessment and launch of the sickle cell ...

Background:

Sickle cell disease is one of the most prevalent genetic disorders in sub-Saharan Africa and poses a major public health challenge. In fact, approximately 66% of the 120 million people living with sickle cell disease worldwide reside in Africa. Although it is a preventable cause of premature mortality when properly diagnosed and managed, sickle cell disease accounts for approximately 6.4% of mortality among children under five in Africa, with between 50% and 80% of affected children dying before the age of five in many settings, largely due to persistent gaps in early detection, systematic screening, and comprehensive registries. Although some national referral centers for sickle cell disease exist, care remains highly centralized, while access to diagnostic technologies such as electrophoresis or isoelectric focusing is often limited to major urban centers. Financial protection mechanisms are limited, and in many settings, patients bear the majority of the costs associated with consultations, diagnostic tests, and treatments. The capacity of the health workforce (HWF) also remains uneven, with significant needs for specialized training, laboratory capacity building, and improved coordination across different levels of care. Finally, governance frameworks vary: although sickle cell disease is recognized as a public health priority in several countries and is sometimes integrated into national programs to combat noncommunicable diseases (NCDs), implementation capacity and sustainable financing remain limited.

Aware of both the scale of unmet needs and the opportunity to build on existing initiatives in the field of hemophilia, the Novo Nordisk Foundation for Hemophilia and Hemoglobinopathies (NNHF) decided, in late 2025, to expand its scope of action to include hemoglobinopathies, particularly sickle cell disease. In West Africa, this expansion is accompanied by the development of a coordinated regional strategy aimed at strengthening integrated care models, increasing diagnosis rates, improving the standardization of treatment guidelines, consolidating patient associations, and strengthening government engagement in the seven countries concerned. Given the significant disease burden, structural gaps in the health system, and growing regional dynamics, a structured, evidence-based regional approach is both timely and necessary to sustainably improve access to quality care for people with sickle cell disease in West Africa.

Thus, as part of the launch of the West Africa 1 project, the NNHF is seeking technical support to inform the development of a multinational strategy to combat hemophilia and hemoglobinopathies in West Africa, with a priority focus on Senegal, Guinea, and Mali through a structured diagnostic assessment of sickle cell disease.

Overall Objective: Contribute to the development of the NNHF’s regional strategy for West Africa regarding hemoglobinopathies, particularly sickle cell disease, through a structured diagnostic assessment across multiple countries, including stakeholder mapping, a situation analysis, and the facilitation of diagnostic workshops at the national level.

Specific Objectives:

SO1: Support and co-facilitate an in-person workshop in Côte d’Ivoire (March 29–30, 2026) to promote alignment among regional partners and prepare advocacy efforts for the official launch of the multi-country project, including the development of harmonized advocacy messages.

SO2: Support a pilot in-person workshop in Senegal (March 27, 2026) to test and refine the framework for stakeholder mapping and situational analysis, as well as to identify preliminary areas of focus for the future development of national strategies.

SO3: Conduct a structured assessment of sickle cell disease in Guinea, Mali, and Senegal, in accordance with the NNHF health framework. This assessment will include stakeholder mapping and situational analyses, supplemented by national diagnostic workshops aimed at validating the results, identifying structural and systemic gaps, and prioritizing key areas of action to guide subsequent strategic planning at the country level.