Debbie de Lacy, School of Special Educational Needs Medical and Mental Health
Bridging Health and Education for Students with Rare Diseases: A Collaborative Resource Development Initiative Children and young people living with rare diseases often experience interruptions to learning, challenges accessing appropriate educational supports and difficulties navigating communication between health, education and the family system. These challenges can contribute to reduced educational participation and place additional demands on students, families and educators. To address these gaps, the Rare Care Centre collaborated with staff from the School of Special Educational Needs: Medical and Mental Health (SSEN: MMH), as well as people with lived experience, clinicians and advocacy partners to develop the educational resource. The collaboration sought to strengthen understanding of rare conditions within schools, promoting more coordinated support for students and their families. This is combined with an animation ‘The weight of Rare Disease’ developed between Syneos and the Rare Care Centre as a tool to assist children with understanding the experience of have a rare disease in the school environment. The resulting resource has been made publicly available through the Department of Health Child Adolescent Health Service internet pages, providing accessible information for families, educators, health professionals and community organisations. The resource was developed using a collaborative approach that recognised the expertise of both professionals and people with lived experience, ensuring content was practical, relevant and responsive to the needs of end users. This initiative demonstrates how partnerships between health and education sectors can create sustainable, accessible resources that support connected learning and wellbeing for children and young people with complex health needs. Key lessons from the co-design process, implementation considerations and opportunities for broader adoption will be discussed. Future directions include strengthening partnerships to explore measurable approaches to improved continuity of education for students living with rare diseases. This work aligns with the H.E.L.P. Alliance theme, Connected Learning, Empowering Lives: Bridging Health, Education and Wellbeing, by demonstrating how collaborative approaches can strengthen educational inclusion, improve communication across sectors, and support positive outcomes for children and young people with complex health needs.