Isaac Okello: Advancing Sickle Cell Research in Uganda
Isaac Okello, Global Genes Leadership Council Member, shared a post on LinkedIn:
“Advancing Sickle Cell Research in Uganda.
I was honoured to join the Ministry of Health Uganda and other key stakeholders at the Marriott Hotel, Kampala, for a critical meeting focused on shaping the future of sickle cell disease (SCD) research in Uganda.
The meeting focused on developing the National Sickle Cell Disease Research Agenda and officially launching the process of developing the National Sickle Cell Prevalence Survey Protocol.
These initiatives are important steps towards generating reliable, evidence-based data to inform policy, strengthen health systems, and improve the quality of life of people living with sickle cell disease.
I participated in my capacity as the President of the Sickle Cell Alliance Uganda (SCAU), its member organizations, and the wider sickle cell community.
As SCAU, we recognize that a strong national research framework is essential for understanding the true burden of sickle cell disease, identifying gaps in care, guiding resource allocation, and ensuring that interventions respond to the real needs of affected individuals and families.
We also emphasized the importance of meaningful involvement of people living with sickle cell disease, caregivers, community organizations, researchers, and healthcare professionals throughout the research process.
Our position remains clear: research must translate into action, evidence must inform policy, and the voices of the sickle cell community must shape the decisions that affect their lives.
I commend the Ministry of Health and all partners for this important initiative. Together, let’s continue to strengthen Uganda’s evidence base, improve sickle cell services, and advance our shared commitment to breaking the sickle cell cycle.
Nothing is for us without us.”
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