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Rare Diseases: Children

Asked by Suella BravermanReform UKDepartment of Health and Social CareTabled Answered 11 November 2025UIN 82680

The question

To ask the Secretary of State for Health and Social Care, what steps NHS England is taking to ensure continuity of care for children with rare or complex conditions when accessing frontline NHS services.

Answered by Ashley Dalton

We are committed to supporting children with long term conditions and ensuring they receive the support they need, including referral to specialist services as appropriate. We want a society where every person, including those with a long-term condition, as well as their families and carers receive high-quality, compassionate continuity of care.

Working under the UK Rare Diseases Framework the Government is committed to improving the lives of those living with rare diseases. The framework’s priorities include better coordination of care and increasing awareness of rare diseases among healthcare professionals, including in primary care. We remain committed to delivering under the framework and published the fourth England action plan on 28 February 2025.

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