This project was implemented by The Sickle Cell Family (TSCF) to empower communities with knowledge, support, and practical information about Sickle Cell Disease (SCD). The project focused on increasing community awareness, reducing stigma and misinformation, promoting early identification, and strengthening support for individuals and families affected by SCD.

The project was implemented in Geita Region and Pwani Region, Tanzania, engaging community members, young people, families affected by SCD, and other relevant community stakeholders.

Through community awareness activities, health education, patient and family engagement, and the use of digital communication, the project created opportunities for communities to better understand SCD and access reliable information and support.

Key Activities

• Community Sickle Cell Awareness Campaigns – Conduct community-based awareness sessions to increase understanding of Sickle Cell Disease, its causes, prevention, early detection, treatment, and available support services.
• Sickle Cell Screening & Early Identification – Promote and support early screening and identification of individuals and families at risk of Sickle Cell Disease, while connecting them with appropriate health services.
• Genetic Education for Families & Communities – Provide education on genetics, inheritance, carrier status, and informed decision-making to help families understand the risk of Sickle Cell Disease.
• Patient & Family Support – Provide information, guidance, psychosocial support, and linkages to available healthcare and community resources for people living with SCD and their families.
• Digital Sickle Cell Patient Registry – Develop and maintain a digital Sickle Cell Patient Registry to securely collect and manage relevant patient and family information, support follow-up, improve patient tracking, and generate useful data for planning, advocacy, and research. TSCF Patient Registry
• Digital Information & Communication – Use digital platforms and communication technologies to share reliable Sickle Cell information, connect patients and families with support, and strengthen community engagement.
• Youth & Community Engagement – Engage young people, community leaders, families, and other stakeholders as Sickle Cell advocates and champions within their communities.
• Stigma & Misinformation Reduction – Address myths, misconceptions, stigma, and discrimination surrounding Sickle Cell Disease through evidence-based community education.
• Patient Data, Research & Advocacy – Use information generated through community activities and the patient registry to identify community needs, support research, strengthen advocacy, and inform better Sickle Cell progra