Policy paper

Rare diseases strategy

Sets out a shared vision for the UK to improve the lives of those with rare diseases.

Detail

The ‘UK Strategy for Rare Diseases’ contains over 50 commitments to ensure people living with a rare disease have access to the best evidence-based care and treatment that health and social services, working with charities, researchers and industry, can provide.

The UK commitments are in 5 areas:

  • making sure patients and their families and carers have the information they need, are listened to and consulted

  • developing better methods of identifying and preventing rare diseases

  • improving diagnosis and earlier intervention for those with a rare disease

  • developing better coordination of care for those with a rare disease, including joined up consultation and treatment schedules

  • building on research to improve personalised approaches to healthcare for those with a rare disease

All 4 UK countries will work together to achieve these goals but will produce their own plans by February 2014 to help put the strategy into action.

A table of commitments indicates which organisation has lead responsibility for working with others to ensure actions are carried out.

The Department of Health would like to thank the UK Rare Diseases Stakeholder Forum for their help during the development of the Strategy.

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