The Osteogenesis Imperfecta Foundation Network, a registered organisation supporting individuals with brittle bone disease, has called for African governments to formulate inclusive policies and invest massively in health for African children with disabilities.
In a statement on Tuesday after it held its inaugural international conference in Hemel Hempstead, UK, the stakeholders emphasised the need for governments and policymakers, particularly in Africa, to be deliberate in making better investments in healthcare for people with OI.
Osteogenesis imperfecta is an inherited bone disorder that is present at birth. It is also known as brittle bone disease. A child born with OI may have soft bones that break easily, bones that are not formed normally, and other problems.
Presenting a research paper at the event titled: “Breaking barriers and enhancing inclusion among disabled children,” the Founder and President of OIFN (Nigeria & UK), Tarela Aghanti said one of the core objectives of the research is to call stakeholders, policymakers, non-governmental organisations, and community leaders to collaborate in mitigating barriers, and fostering an inclusive environment for African children with disabilities.
The research, which was conducted by Aghanti alongside Bishop Davis Gatua from Kenya, is intended to contribute to global disability discourse offering scalable solutions for marginalised populations.
Aghanti said, “By breaking these barriers, we aim to create dignified, sustainable, and impactful inclusion practices for future generations.”
Aghanti, who is also the Deputy Governor of the National Youth Council of Nigeria (Europe Chapter) and the Brand Ambassador UN delegate, further noted that the OI conference is to raise awareness about the disorder.
“The conference is also to raise awareness about OI in underrepresented ethnic minority communities in the UK and Africa, develop advocacy plans and joint action strategies for inclusivity, encourage collaboration between OI organisations, stakeholders, and governments, and strengthen commitment to OI/disability-inclusive initiatives in Africa”.
The organisation pledged that it will continue to support OI sufferers in Africa, raising funds for corrective surgeries, including a planned 2026 event in Nigeria, while seeking ways to expand partnerships and membership within its network.
Speaking on the treatment and management of the condition, Prof. Maryann Ibekwe, of the Department of Paediatrics, Ebonyi State University, stated, “Management has to go together with orthopaedic surgery, physical and occupational therapy, nutrition, psychology, social services, and audiology.
“It’s important to ensure a definitive diagnosis, which should include skin biopsy, gene investigation, and collagen pattern using a multidisciplinary approach.
“One of the challenges of the undiagnosed is the lack of facilities for prenatal diagnosis, which can be done clinically. This can be used for diagnosis through ultrasound as early as the second trimester.”
She added that bisphosphonate treatment is the mainstay of treatment for OI in Africa.
“Impact on health and quality of life for the individuals with OI remains a critical issue. Healthcare affordability is another key matter impacting treatment and quality of life for persons with OI in Africa,” she emphasised.
