Who we are
Rare4Schools was founded in 2025 by Gavin and Joanne Hepherd‑Hall, parents to a daughter with the rare condition Hyperinsulinism. Their journey into the world of rare disease has been met with many challenges, not least at the nursery gates, a moment that should have been filled with excitement and possibility. Instead, it was overshadowed by fear. They were handing their daughter into the care of a system that had never heard of her condition, had no training to manage it and no framework to understand the risks. Every drop-off felt like a leap of faith.
The anxiety they experienced was not rooted in a lack of trust in educators but in a lack of awareness, guidance and confidence within the system itself. They quickly realised that if nothing changed, this uncertainty would follow their daughter through every transition, every classroom, every new teacher. And they knew they were not alone, thousands of families across the UK were navigating the same invisible battle.
Gavin and Joanne decided that “hoping for the best” was not good enough. With more than forty years of combined experience as teachers, senior leaders and specialists in mainstream and SEND education, they understood the system from the inside. They had led departments, shaped curriculum, trained staff and supported vulnerable learners. They knew the pressures schools face and they knew that with the right tools, educators could absolutely meet the needs of children with rare, chronic and fluctuating conditions.
Their professional expertise, combined with their lived experience as parents, became the foundation of Rare4Schools. Gavin, a former senior leader and Head of Mathematics, brings strategic clarity, systems thinking and a deep commitment to equity. Joanne, a former English leader and SEND specialist, brings compassion, creativity and a fierce belief in the power of inclusive practice. Together, they channel their personal journey into a national mission for change.
At the heart of Rare4Schools is a simple but transformative belief: the democratisation of education is a moral imperative. No child should be disadvantaged because their condition is rare. No family should have to fight for understanding. No teacher should be left without the knowledge or confidence to support a child in their care.
Rare4Schools works to ensure that a rare disease is never a barrier to learning. We raise awareness, build understanding and create practical, evidence‑informed resources that empower schools to support pupils with rare conditions safely, confidently and compassionately. We collaborate with families, educators, clinicians and national organisations to close the gaps between health, education and social care; gaps that too often leave children unseen and unsupported.
Rare4Schools is more than a charity. It is a movement for systemic change. It is a community built on lived experience, professional expertise and a shared determination to make education fairer for every child. It is a call to action for schools, policymakers and society to recognise that rarity does not mean invisibility.
We exist to make sure that every child with a rare disease is understood, included and able to thrive, not in spite of their condition but because the system around them is ready to meet their needs.
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