By Chioma Obinna

The OIF Network, a registered organisation that supports individuals with Osteogenesis Imperfecta, OI (brittle bone disease), has stressed the critical need for governments and policymakers, particularly in Africa, to make deliberate investments in healthcare for people living with OI.“OIF Network convened its inaugural International Conference at the Shendish Manor Hotel & Golf Course, and experts and advocates were in attendance.

A central theme of the conference was the imperative to break down barriers and foster greater inclusion for disabled children.

Presenting a research paper titled “Breaking Barriers and Enhancing Inclusion Among Disabled Children,” Tarela Aghanti, Founder/President of OIFN (Nigeria & UK), highlighted a core objective of the study: “To call stakeholders, policymakers, non-governmental organisations, and community leaders to collaborate in mitigating barriers, fostering an inclusive environment for disabled children in rural Africa.”

The research, co-authored by Aghanti and Bishop Davis Gatua from Kenya, aims to enrich the global disability discourse by offering scalable solutions for marginalised populations. Aghanti affirmed the overarching goal: “By breaking these barriers, we aim to create dignified, sustainable, and impactful inclusion practices for future generations.”

Delving into the complexities of treatment management, Prof. Maryann Ibekwe of the Department of Paediatrics, Ebonyi State University in Nigeria, underscored the multifaceted approach required. “Management has to go together with orthopaedic surgery, physical/occupational therapy, nutrition, psychology, social services and audiology,” she stated.

Ibekwe further emphasised the importance of a definitive diagnosis, advocating for a multidisciplinary approach encompassing skin biopsy, gene investigation, and collagen pattern analysis. She pointed out a significant challenge in undiagnosed cases: “One of the challenges of the undiagnosed is the lack of facility for prenatal diagnosis, which can be done clinically.” Such diagnosis, she noted, “Can be used for diagnosis through ultrasound as early as the second trimester.”

Ibekwe affirmed that Bisphosphonate treatment remains the mainstay for osteogenesis imperfecta in Africa, yet cautioned, “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.”

In her opening remarks, Tarela Aghanti, who also serves as the Deputy Governor of the National Youth Council of Nigeria (Europe Chapter) and a Brand Ambassador UN delegate, outlined the broader objectives of the OI conference.  These include: “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 OIF Network announced its ongoing commitment to supporting individuals with OI in Africa, building on past initiatives. The organisation plans to continue fundraising for corrective surgeries, including a significant event slated for Nigeria in 2026, while actively seeking to expand its partnerships and membership within its network.