Rare diseases: UK strategy

Information about how the UK plans to implement the strategy to improve the lives of people living with rare diseases.

UK strategy for rare diseases

The UK strategy for rare diseases sets out a shared vision for improving the lives of all those with rare diseases in the UK by 2020. It makes 51 commitments in a number of different areas.

Each country in the UK will take action and develop plans to implement the strategy that best meets their own health and care systems, but will work together where it makes sense to do so.

Implementation in England

NHS England is responsible for implementing the rare disease commitments relevant to health care. They’re working closely with the Department of Health, National Institute for Health Research, Health Education England and other organisations to achieve commitments relevant to research and education.

Statement of intent

The statement of intent outlines how NHS England intends to achieve their commitments and how they will work with partners on all other commitments in the strategy.

Five-year forward view

NHS England’s five-year forward view, which sets out a vision for the future of the NHS, covers a number of issues that align closely with the UK strategy for rare diseases.

Implementation in other UK countries

Monitoring implementation of the strategy

Rare disease videos

Rare Disease: A family’s journey

Rare Disease: The GP’s role


National register for rare diseases

UK strategy for rare diseases

The strategy page below includes a table of commitments showing which organisation has lead responsibility for working with others to ensure actions are carried out.

Published 28 February 2014
Last updated 27 February 2019 + show all updates
  1. Added 'UK strategy for rare diseases: 2019 update to the implementation plan for England' to the document collection.

  2. Added 'UK Rare Disease Policy Board: second progress report'.

  3. Added 'UK strategy for rare diseases: implementation plan for England'.

  4. Added information on UK Rare Diseases Policy Board.

  5. Added link to new UK Rare Diseases Stakeholder Forum progress report.

  6. Includes information about NIHR research and the national register for rare diseases.

  7. Added links to 2 videos about rare diseases produced by Health Education England.

  8. added Northern Ireland’s Statement of Intent for the UK Strategy of Rare Diseases

  9. First published.