![Osteogenesis Imperfecta Foundation Network [OIFN]](https://oifn.org/wp-content/uploads/2024/07/logo_oif.png){kind=logo}
On May 17, 2025, history was made as **The OIF Network—a registered organisation supporting individuals with Osteogenesis Imperfecta (OI)—hosted its inaugural International Conference at the scenic Shendish Manor Hotel & Golf Course in Hemel Hempstead, UK. Held under the theme **“Breaking Boundaries” the conference brought together a diverse coalition of medical professionals, researchers, advocates, OI individuals, caregivers, and policymakers from across the UK, Africa, and beyond.
The event began with a symbolic *flag match at the grand opening ceremony, representing nations coming together to promote a shared identity, purpose, and commitment to a more inclusive world for people living with brittle bone disease. This display of unity reinforced the conference’s core values—collaboration, advocacy, trust-building, and cultural diversity*—as essential elements for creating a cohesive and inclusive society for those affected by OI.
Uniting Professionals to Improve Global Outcomes in OI Care
The conference demonstrated the transformative power of bringing together OI professionals across borders and disciplines. From orthopaedic surgeons and geneticists to physiotherapists, researchers, and community leaders, attendees shared critical insights. They developed innovative, culturally appropriate strategies to advance OI care globally—especially in underserved regions, such as parts of Africa.
Key benefits of this collaboration included:
Knowledge Exchange: Cross-border sharing of clinical practices, diagnostic advancements, and multidisciplinary treatment approaches.
Global Health Advocacy: A collective call for deliberate investment in OI healthcare by governments in both the UK and Africa.
Capacity Building: Empowering professionals and institutions in low-resource settings to improve patient care.
Community Empowerment: Ensuring patient voices shaped discussions, creating a truly people-centred approach.
Stakeholders Call for Action
Speakers at the conference were *unanimous in urging policymakers* to prioritise rare disease healthcare, with a particular focus on equity, affordability, and accessibility.
Tarela Aghanti, Founder and President of The OIF Network and UN Delegate, delivered a powerful opening speech, stating: This conference aims to raise awareness about OI in underrepresented ethnic minority communities in the UK and Africa, and to build joint action strategies for inclusivity.”
She further encouraged deeper collaboration between OI organisations, governments, and NGOs, reaffirming OIFN’s commitment to disability-inclusive development.
Research for Inclusion and Impact
One of the highlights of the day was the presentation of a groundbreaking research paper titled:
Breaking Barriers and Enhancing Inclusion Among Disabled Children,”
co-authored by *Tarela Aghanti (UK)* and **Bishop Davis Gatua (Kenya).
The research calls on stakeholders—including NGOs, community leaders, and policymakers—to work collaboratively to eliminate systemic barriers and promote scalable, dignified solutions for marginalised groups. As noted in the paper:
“By breaking these barriers, we strive to create dignified, sustainable, and impactful inclusion practices for future generations.”
Expert Perspectives on Treatment and Diagnosis
Renowned paediatrician Prof. Maryann Ibekwe of Ebonyi State University, Nigeria, spoke on comprehensive OI management:
“Effective treatment must combine orthopaedic surgery, physiotherapy, nutrition, psychology, and social support. A multidisciplinary approach is essential.”
She emphasised the importance of early and accurate diagnosis, including **skin biopsy, genetic testing, and collagen analysis, highlighting the challenges posed by limited diagnostic infrastructure in many African settings. She also emphasised that bisphosphonate therapy remains the mainstay of OI treatment but warned that affordability remains a critical barrier to access in Africa.
Message of Appreciation from the OI Kenyan Community, Nigerian OI Community, and Nairobi Delegation
We also received thank-you messages from the OI Kenyan Community, the Nigerian OI Community, and the Nairobi Delegation, who attended the event—each expressing profound gratitude and highlighting the many benefits gained, which will be shared with their respective members and networks.
This historic gathering was more than just a conference—it was a powerful platform for learning, connection, and advocacy. We are especially grateful for the warm hospitality and inclusive environment created by The OIF Network, which allowed us to feel truly seen, heard, and empowered.
Key Benefits and Knowledge Gained:
• Enhanced understanding of multidisciplinary OI management, including the importance of early diagnosis, physiotherapy, orthopaedic surgery, nutrition, mental health support, and audiology.
• Insight into inclusive disability research, particularly on breaking barriers for children with OI and other disabilities in underserved communities.
• Strengthened advocacy strategies, equipping us to better engage policymakers, raise public awareness, and push for inclusive healthcare policies within our countries.
• Valuable networking opportunities with global experts and peers, inspiring future collaborations, shared resources, and community support initiatives.
• Renewed motivation and confidence to continue raising awareness, educating caregivers, and supporting individuals living with OI across our regions.
We also received many heartfelt messages from members of our communities back home who closely followed the event. They expressed immense pride in seeing OI voices from Africa represented on a global stage, and a shared sense of hope and solidarity.
Thank you for creating a space where borders were broken, voices were amplified, and hope was renewed. We look forward to continued collaboration and remaining active contributors to the growing global OI movement.
With heartfelt gratitude,
OI Kenyan Community
Nigerian OI Community
Nairobi Delegation
#Together4OI
#OIFN2025
#BreakingBoundaries
Looking Forward
The success of the OIFN International 2025 Conference underscores the value of global, inclusive collaboration. Beyond being a medical forum, the event was a powerful movement of solidarity, advocacy, and hope for people living with brittle bone disease.
As OIFN looks ahead, it remains committed to:
* Expanding partnerships and international membership
* Advocating for policy change and equitable healthcare
* Creating more inclusive spaces where the voices of OI individuals and families are amplified
We are strong together.”
OIFN, #Together4OI
Community Testimonials
These powerful stories underscore the importance of centring lived experiences in advocacy efforts—placing real people at the heart of the movement for inclusive, dignified care for all.
Community Testimonials
These powerful stories underscore the importance of centring lived experiences in advocacy efforts—placing real people at the heart of the movement for inclusive, dignified care for all.