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A rare disease is a health condition that affects fewer than 1 in 2,000 people.
Although each condition is uncommon, there are over 7,000 recognised rare diseases, meaning many families live with complex and often misunderstood medical needs.
Rare diseases may affect physical health, development, learning, or communication, and often require specialist care.
Children and families affected by rare diseases may face:
Support requires flexibility, compassion and coordination between education and healthcare teams.
Learn about challenges of rare diseases
Understand how families manage complex medical and educational needs.
Diagnosis usually involves:
Some conditions may remain undiagnosed for years (“syndromes without a name”).
Regardless of diagnosis, children are entitled to appropriate educational and healthcare support.
Children with rare diseases may need:
An EHCP can ensure joined-up provision between medical, educational and therapy services.
Effective support depends on:
