Tarela Aghanti, Founder Osteogenesis Imperfecta Foundation Network, Nigeria and UK

Our community stands united under the banner “Hope, Strength, and Resilience”, coming together with a shared purpose to raise awareness about osteogenesis imperfecta—a rare condition that 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: the medical, educational, and public spaces, 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 orthopedic, genetics, physiotherapy, and mental health support. By embedding research at the core of this initiative, we are ensuring that awareness translates into improved clinical competence, better patient outcomes, and a more responsive healthcare system for rare diseases.

In the education space, we extend this awareness into universities and training environments where future healthcare professionals are shaped. Here, OI becomes part of academic dialogue, case-based learning, and clinical curiosity. By introducing students early to rare conditions, 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 begins at 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, for inclusion, and for a future where individuals living with OI are fully embraced within healthcare systems and society.

Because awareness is the way forward—and inclusivity is the future we are building together.

Kategorie:

Pressemitteilung 

Organisation:

Osteogenesis Imperfecta Foundation Network

Geschrieben von:

Tarela Aghanti