Uganda pushes continental plan for rare disease screening

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Uganda is leading calls for Africa to scale up newborn screening and early diagnosis for rare blood disorders, as health ministers, scientists and development partners gather in Kampala to validate and launch the Africa CDC Continental Plan for Sickle Cell Disease and Other Rare Blood Disorders.

Speaking at the three-day meeting at Speke Resort Munyonyo on May 11, 2026, Uganda’s health leaders said many rare blood disorders across Africa remain undiagnosed until severe complications emerge, contributing to preventable deaths and catastrophic costs for families.

Health minister Dr Jane Ruth Aceng said Africa carries more than 80% of the global burden of sickle cell disease, with more than 300,000 children born annually with the condition on the continent.

“These are not statistics, but our children. Without intervention, up to 90% do not make it to their fifth birthday,” Aceng said.

Uganda alone records about 20,000 babies born with sickle cell disease every year, ranking fifth in Africa after Nigeria, DR Congo, Tanzania and Cameroon.

However, Aceng said the new continental strategy seeks to move beyond sickle cell disease and strengthen screening systems for other rare blood disorders, including haemophilia and inherited conditions that have historically received little political attention in African health systems.

Director general of health services Prof. Charles Olaro said Uganda’s experience has demonstrated that early screening and treatment can significantly improve survival.

“When a child is screened at birth, linked to care, started on hydroxyurea and followed up consistently, they survive. They grow. They go to school. They have a future,” Olaro said.

Olaro said the Kampala meeting represents a major shift towards treating rare blood disorders as a public health priority rather than isolated specialist conditions.

“This plan will be measured not in documents validated on paper,” Olaro said, “but in children who survive and families who are no longer pushed into poverty because of disease.”

Uganda has screened more than 500,000 newborns over the past decade through the Consortium on Newborn Screening in Africa (CONSA), while integrating screening into immunisation and maternal-child health services.

The continental plan aims to ensure that by 2035, at least 70% of newborns across Africa are screened for sickle cell disease and other rare blood disorders, while 80% of eligible patients access hydroxyurea treatment.

Health ministry permanent secretary Dr Diana Atwine said Uganda is also pushing for rare disease indicators to be integrated into national health data systems to improve surveillance and accountability.

“We cannot manage what we cannot measure,” she said, urging African countries to adopt standardised reporting through DHIS2 platforms.

The plan further proposes continental pooled procurement of diagnostic kits, blood products and medicines to reduce costs and improve access, especially for countries struggling with fragile supply chains.

Dr Nmazuo Ozuah of Texas Children’s Global HOPE said Africa has spent years operating pilot programmes without achieving large-scale implementation.

“The issue is not whether we know how to manage sickle cell disease. We already know what works,” he said. “The challenge is translating those interventions into a continental scale.”

He noted that Africa loses an estimated $9 billion annually due to sickle cell disease, while many affected children die before reaching hospitals.

Uganda recently launched locally manufactured newborn test kits and is exploring local production of hydroxyurea, a key medicine used to reduce complications among sickle cell patients.