Sickle Cell Disease

The issue

Sickle Cell Disease (SCD) is a significant public health concern in Uganda, affecting an estimated 20,000 to 25,000 children born annually with the condition. Uganda ranks among the highest in the world in terms of SCD prevalence, with approximately 13.3% of the population carrying the sickle cell trait. The disease has profound socio-economic impacts on families and communities, particularly in rural and underprivileged areas where healthcare access is limited.

High Disease Burden
Diagnostic Challenges
Access to Healthcare
Stigma and Awareness

Our main actions

Expand Newborn Screening Programs

Scale up newborn screening for SCD in Kapchorwa-Uganda, especially in rural areas where the disease burden is highest.

Improve Access to Comprehensive Healthcare

Strengthen healthcare infrastructure by ensuring that hospitals and clinics, particularly in rural areas, are equipped with diagnostic tools (like hemoglobin electrophoresis) and medicines (such as hydroxyurea and antibiotics).

Enhance Access to Blood Transfusion Services

Ensure a reliable supply of safe blood for transfusions, particularly in rural hospitals, where access is currently limited.

Increase Public Awareness and Education

Launch mass awareness campaigns through media, schools, and community programs to educate the public about SCD, its causes, and how to manage it. Encourage genetic counseling and family planning for couples who may be carriers of the sickle cell trait.

Strengthen Training for Healthcare Workers

Train more healthcare professionals—especially at the local level—in diagnosing and managing SCD. Specialized training in pain management, blood transfusion protocols, and hydroxyurea administration is crucial.

Provide Psychosocial Support for Families and Patients

Develop support programs for SCD patients and their families, including counseling, peer support groups, and community outreach.

Research and Data Collection

Invest in research on SCD to better understand its epidemiology in Uganda, explore local treatment approaches, and track patient outcomes. Establish national SCD registries to help with data collection and monitoring.