The flag match at the grand opening ceremony of the just-concluded Osteogenesis Imperfecta Foundation Network Inaugural International Conference, on 17th May 2025, demonstrates nations coming together to foster a shared sense of identity, purpose, and belonging. This can be achieved through various means, including promoting shared values, encouraging civic engagement, celebrating cultural diversity, engaging in meaningful interactions, collaboration, advocacy, and a stronger voice for people with brittle bone condition, a rare disease, in Africa and the UK. Fostering trust between oi individuals, communities, and institutions is essential for creating a cohesive, supportive and most inclusive society for oiers.

Stakeholders Advocate For Better Healthcare For Persons With OI.

The OIF Network, a registered organisation supporting individuals with brittle bone disease (Osteogenesis Imperfecta), held its inaugural International Conference on May 17, 2025, at the Shendish Manor Hotel & Golf Course in Hemel Hempstead, UK.
Speakers were unanimous in their support for governments and policymakers in the UK and Africa to make deliberate investments in healthcare for people with OI.

Presenting a research paper at the event, the Founder/President of OIFN (UK)

Titled: Breaking Barriers and Enhancing Inclusion Among Disabled Children, 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 people in the country”.

The research, conducted by Aghanti from the UK in collaboration with Bishop Davis Gatua from Kenya, aims to contribute to the global discourse on disability. Offering scalable solutions for marginalised populations, affirming that:” By breaking these barriers, we strive 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, says: “Management has to go together with orthopaedic surgery, physical/occupational therapy, nutrition, psychology, social services and audiology”.

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

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

In her opening speech, Tarela Aghanti, 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. She encourages collaboration between OI organisations, stakeholders, and governments. And strengthen the commitment to OI/disability-inclusive initiatives across the event, as it attracted many people from diverse cultures, backgrounds, and races, including professionals, caregivers, and OI sufferers, including speakers from around the globe.

The OIF Network revealed that, aside from the efforts made in past years, the organisation will continue to support OI sufferers while seeking ways to expand partnerships and membership within its network.

We want to express our sincere gratitude to all our speakers at the just-concluded OIF Network inaugural international conference 2025. With the theme “Breaking Boundaries” #together4oi.

We are strong together.