Foundation launches campaign on rare bone disorder, pushes inclusion
The Osteogenesis Imperfecta Foundation Network (OIFN), Nigeria and UK, has launched a nationwide awareness campaign aimed at improving recognition, care, and inclusion for people living with osteogenesis imperfecta (OI), a
The Osteogenesis Imperfecta Foundation Network (OIFN), Nigeria and UK, has launched a nationwide awareness campaign aimed at improving recognition, care, and inclusion for people living with osteogenesis imperfecta (OI), a rare genetic bone disorder.
Founder of the network, Tarela Aghanti, said the initiative, themed: “Hope, Strength, and Resilience,” seeks to unite stakeholders and amplify advocacy for individuals affected by the condition, which remains largely under-recognised across healthcare, education, and society.
In a statement ahead of global OI awareness activities in May, Aghanti said the campaign in Abuja would span medical, educational, and public spaces to drive a coordinated response to the challenges faced by patients and their families.
She noted that in the medical space, the foundation would engage healthcare professionals and university medical students through research-driven discussions, clinical exposure, and evidence-based learning.
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According to her, the objective is to deepen clinical understanding of OI, improve early diagnosis, and promote multidisciplinary care involving orthopaedics, genetics, physiotherapy, and mental health support.
Aghanti added that embedding research into the initiative would enhance clinical competence and patient outcomes, while strengthening the healthcare system’s response to rare diseases.
In the education sector, she said the foundation is working to integrate awareness of OI into universities and training programmes for future healthcare professionals.
She described education as a critical tool for long-term change, stressing that early exposure would build awareness into the foundation of professional training.
On the public front, Aghanti said activities would be held at Eagle Square, Abuja, to engage communities, families, policymakers, and other stakeholders.
She explained that the public engagement would amplify the voices of people living with OI, share lived experiences, and promote conversations that extend beyond clinical and academic settings.
Aghanti noted that the initiative would deliver benefits across multiple levels, including improved care pathways for patients, greater support for families, enhanced diagnosis and collaboration within the healthcare system, and increased research interest among students and professionals.
She added that the campaign would also help build a more informed and compassionate society that recognises and values individuals living with rare conditions.
Aghanti called on stakeholders to support the movement, expressing optimism that increased awareness would drive inclusion and ensure that people living with OI are fully embraced by both healthcare systems and society.
The statement reads: “Our community stands united under the banner: ‘Hope, Strength, and Resilience,’ coming together with a shared purpose to raise awareness about osteogenesis imperfecta.
“This rare condition significantly impacts individuals and families, yet remains widely under-recognised across healthcare, education, and society at large.
“This year, as we join the global stage this May, we raise our voices in strong solidarity for OI awareness and OI inclusivity, ensuring that individuals living with this condition are seen, understood, and fully supported.
“Our campaign in Abuja spans three interconnected spaces: medical, educational, and public, creating a unified movement grounded in knowledge, compassion, and advocacy.
“In the medical space, we engage healthcare professionals and university medical students through research-championed discussions, clinical exposure, and evidence-based learning.
“The goal is to strengthen clinical understanding of OI, improve early diagnosis, and promote multidisciplinary care approaches involving orthopaedics, genetics, physiotherapy, and mental health support.
“By embedding research at the core of this initiative, we’re ensuring that awareness leads to improved clinical competence, better patient outcomes, and a more responsive healthcare system for rare diseases.
“In education, we raise awareness in universities and training programs where future healthcare professionals are shaped. Here, OI becomes part of academic dialogue, case-based learning, and clinical curiosity.
“By introducing students to rare conditions early, we are nurturing a generation of practitioners who are not only knowledgeable but also deeply empathetic and committed to inclusive healthcare practices.
“Education becomes a powerful tool for long-term change, ensuring that awareness is built into the foundation of professional training.
“In the public space, we bring this message to the heart of the nation at Eagle Square. This is where awareness meets everyday life, where communities, families, policymakers, and individuals come together.
“Here, we amplify voices, share lived experiences, and spark meaningful conversations that extend beyond clinical and academic settings into society as a whole. Because awareness must exist where people live, interact, and make decisions.
“The key aim of this movement is to inform, connect, and inspire action. Awareness is the foundation of inclusion.
“It leads to earlier recognition of OI, reduces stigma, promotes empathy, and strengthens both community and healthcare support systems.
“When awareness grows, silence is replaced with understanding, and exclusion is replaced with inclusion.
“The benefits of this initiative are far-reaching. For patients, it means dignity, visibility, and better care pathways. For families, it provides understanding and support. For healthcare systems, it strengthens diagnosis and multidisciplinary collaboration.
“For students and professionals, it fosters research interest and clinical innovation. And for society, it builds a more compassionate and informed community that recognises and values every individual, regardless of how rare their condition may be.
“’Hope, strength, and resilience’ is more than a theme - it is a commitment to visibility, equity, and lasting impact. This May, as we stand on the global stage, we raise our voices for awareness, inclusion, and a future where individuals living with OI are fully embraced by healthcare systems and society.
“Because awareness is the way forward, and inclusivity is the future we are building together.”
