Stakeholders Advocate for Better Healthcare for Persons With OI

The Osteogenesis Imperfecta Foundation (OIF) Network, a registered organisation supporting individuals with brittle bone disease (Osteogenesis Imperfecta, OI), on May 17, 2025, held its inaugural International Conference at the Shendish Manor Hotel & Golf Course in Hemel Hempstead, UK.

Speakers at the Conference agreed with one accord that governments and policy makers particularly in Africa, need to be deliberate and intentional in making better investment in healthcare for people with OI.

Presenting a research paper at the event titled: Breaking Barriers and Enhancing Inclusion Among Disabled Children, Mrs Tarela Aghanti, Founder/President of OIFN (Nigeria & UK) 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. Fostering an inclusive environment for disabled children in rural Africa”.

The research which was conducted by Mrs Aghanti alongside Bishop Davis Gatua from Kenya, is intended to contribute to global disability discourse, offering scalable solutions for marginalized populations.

Mrs Aghanti, affirmed that: “By breaking these barriers, we aim to create dignified, sustainable, and impactful inclusion practices for future generations”.

Speaking on Treatment Management, Prof Maryann Ibekwe, of the Department of Paediatrics, Ebonyi State University in Nigeria said: “Management has to go together with orthopedic surgery, physical/occupational therapy, nutrition, psychology, social services and audiology”.

Prof Ibekwe stated that it’s important to ensure definitive diagnosis which should include; skin biopsy, gene investigation, and collagen pattern using a multidisciplinary approach. According to her, “One of the challenges of the undiagnosed is the lack of facility for prenatal diagnosis, which can be done clinically”.

This she said: “Can be used diagnosis through ultrasound as early as the second trimester”.
Concluding that Bisphosphonate treatment is the main stay of treatment for osteogenesis imperfecta in Africa. Saying: “Impact on health and quality of life for the individuals with OI remain a critical issue. Healthcare affordability is another key matter impacting on treatment and quality of life for persons with OI in Africa”.

In her opening speech Tarela Aghanti who is also the Deputy Governor, of the National Youth Council of Nigeria (Europe Chapter) and the Brand Ambassador UN delegate, says the OI 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 organizations, stakeholders, and governments. And Strengthen commitment to OI/disability-inclusive initiatives in Africa”.

The OIF Network revealed that aside what has been done in the past years. The organisation will continue supporting OI sufferers in Africa, Raise funds for corrective surgeries, including a planned 2026 event in Nigeria. While seeking ways to expand partnerships and membership within its network.