Bringing the Invisible to Light: Foundation Targets Undiagnosed Hemophilia in Nigeria’s Rural Communities
In a country of over 230 million people, just 941 have been officially recorded as living with Hemophilia —a number that underscores a troubling reality: thousands of Nigerians with this potentially life-threatening disorder remain undiagnosed, unseen, and untreated.
The Hemophilia Foundation of Nigeria (HFN) is taking bold steps to change that. At a press conference on Thursday, founder Megan Bukie Adediran launched the foundation’s new initiative, “Road to Clot”, a program designed to take Hemophilia awareness, testing, and care out of the hospitals and directly into communities.
“Hemophilia and other bleeding disorders have remained largely invisible, not because they are rare, but because they are rarely recognised,” Adediran said. She urged governments, healthcare professionals, traditional and religious institutions, and civil society groups to partner with the program, stressing that early diagnosis can save lives.
The statistics are stark. Based on global prevalence rates, Nigeria should have tens of thousands of people living with hemophilia or inherited bleeding disorders—yet the official registry captures only a tiny fraction. “That gap represents real people,” Adediran explained, “children, youth, and adults who continue to live with unexplained bleeding, repeated hospital visits, preventable disability, or even loss of life—simply because no one has asked the right questions or conducted the right tests.”
Road to Clot aims to fill that gap by bringing mobile testing units and community outreach points to schools, faith centres, and local gathering places. Individuals will receive structured bleeding history assessments, basic clotting screening tests, and on-the-spot counselling. Those with abnormal results will be referred for confirmatory testing and linked to care.
“The goal is simple, yet powerful: identify people early, reduce years of suffering, and create a pathway into care,” Adediran said. She emphasised that access is not just about the availability of tests; it’s also about trust and proximity. “Many people do not seek care because facilities are far, costs are high, or symptoms have become normalised. By meeting people where they are, we remove some of the biggest barriers to diagnosis.”
Beyond individual care, the initiative is data-driven. Every identified case strengthens Nigeria’s national bleeding disorders registry, informs policy and planning, and supports advocacy for funding and treatment access.
Adediran acknowledged the limitations of the current system: “Treatment access in Nigeria still heavily depends on support from the World Federation of Hemophilia Aid Program, which provides life-saving factor concentrates through the Hemophilia Foundation of Nigeria as its national member organisation.”
The launch of Road to Clot is a critical reminder that for too long, hemophilia has been a silent condition in Nigeria—ignored, underdiagnosed, and underfunded. With this initiative, the hope is that invisibility will no longer be the norm, and that children and adults living with bleeding disorders can finally be seen, treated, and supported.
