Our Mission

A rare disease should never be a barrier to learning.

Rare4Schools aims to support schools to better understand and include children with rare diseases - reducing isolation, easing parental anxiety and ensuring every child has equal access to learning.

“Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” WHO

While any single rare disease impacts very few people by it's very definition the quantity of rare diseases means that collectively they are not rare with some 2.7 million children affected in the UK. Unfortunately for those suffering with rare diseases they are often left floundering for support in an education system that cannot be expected to be aware of every rare disease.  More common conditions such as diabetes and cerebral palsy have long established norms of care and large organisations behind them with schools having some prior experience with such conditions. Further compounding this need is the isolation that children with rare diseases feel when they are unlikely to meet anyone with the same condition. This leads to stigma and anxiety.

Finally, for parents the challenges can be many when we consider we ask them to trust their child to someone else's care who does not know the condition. This can lead to parents feeling anxious about school and increasing chances of home schooling which leads to further isolation.

Rare4Schools is a compassion first organisation that aims to bring an equality in access to learning providing schools with support that enables them to better meet the needs of all children. In 2025 the World Health Assembly 78 passed a resolution declaring rare diseases a global emergency. While we welcome governments focus on health the WHO includes social and mental health as key components in their definition of health. As such schooling should form any part of the discussion in meeting the obligations of governments in addressing this global emergency.

Our 4 pathways to success

  • A Framework - The Rare Disease Framework provides a structure for schools and families to support children in achieving their best.

  • A Toolkit - we are developing a toolkit to provide continual support to schools and families to put the framework into practise.

  • A Hub - our hub will provide links to other organisations and blogs for parents to support engagement with schools.

  • A Voice - we will advocate for families with parliamentarians, the DfE and school systems to give families a voice.