The Sickle Cell Cohort Research (SCORE) Foundation is a registered charity dedicated to improving the lives of people living with sickle cell disease, through research, collaboration, and community empowerment.
Our History
SCORE's story begins with a shared conviction: that sickle cell disease in Africa deserved more than it was getting.
As early as 2004, Nigerian professionals in the diaspora—across the UK and US—began conversations about what coordinated research on SCD in Africa could look like. In 2006, an informal gathering in London brought these voices together. By 2007, the London Focus Sickle Cell Africa (LFSCA) had been formally established.
Following the World Congress on SCD in Benin Republic in January 2009, haematology and infectious disease specialists agreed to pursue joint working arrangements. This partnership led to a landmark EC-UNDP pilot project that established newborn screening programmes for SCD in Abuja, Kaduna, and Katsina states in 2011.
SCORE was formally constituted in September 2013 under the Collaboration for Health Advancement in Research (CHAIR), registered with the Corporate Affairs Commission of the Federal Government of Nigeria (CAC/IT/NO 64029). It was built to give this work permanence, and a future.
VISION
A world where people living with sickle cell disease regardless of where they are born, have access to the care, research, and support they deserve.
Mission
To support indigenous scientists through translational research; to reduce preventable deaths; and to improve the quality of life for individuals living with sickle cell disease, while empowering families and communities to advocate for themselves.
How we work
We pursue our mission through four interconnected areas of work:
• High-impact research across the full SCD spectrum: From newborn screening and early diagnosis through treatment, complication recognition, and end-organ damage.
• Health systems strengthening: Building laboratory capacity and clinical infrastructure in low-resource settings.
• Implementation science: Translating research findings into actionable health policy at government and institutional levels.
• Community empowerment: Raising public awareness and supporting individuals and families to understand, navigate, and advocate around an SCD diagnosis.
Our objectives
• Establish sustainable long-term health partnerships with organisations and individuals committed to advancing sickle cell care.
• Ensure SCD diagnosis and management are continuously informed by the latest research and national developments.
• Empower indigenous scientists to drive transformation in their communities through research.
• Improve quality of life for patients through effective, holistic, and person-centred care.
• Address the psychosocial dimensions of living with SCD—including mental health, quality of life, myths around diagnosis, and long-term acceptance.
