Collection

Rare diseases: UK strategy

Information about the 2013 UK strategy for rare diseases.

• From: Department of Health and Social Care
• Published: 28 February 2014
• Last updated: 24 February 2022 — See all updates

UK strategy for rare diseases

The UK strategy for rare diseases was published in 2013 and set out a shared vision for improving the lives of all those with rare diseases in the UK by 2020.

The strategy expired at the end of 2020 and in January 2021 was replaced by the UK Rare Diseases Framework.

Implementation of the strategy in England

The UK rare diseases strategy was jointly implemented in England by NHS England and the Department of Health and Social Care with each publishing separate implementation plans. See the NHS England implementation plan.

Implementation in Scotland, Wales and Northern Ireland

• Scotland implementation plan
• Wales implementation plan
• Northern Ireland implementation plan

UK strategy for rare diseases

• UK strategy for rare diseases: 2020 update to the implementation plan for England
  • 26 February 2020
  • Policy paper
• UK strategy for rare diseases: 2019 update to the implementation plan for England
  • 27 February 2019
  • Policy paper
• UK rare disease policy board: second progress report
  • 28 February 2018
  • Independent report
• UK strategy for rare diseases: implementation plan for England
  • 29 January 2018
  • Policy paper
• Rare diseases strategy
  • 22 November 2013
  • Policy paper

Published 28 February 2014
Last updated 24 February 2022 + show all updates

1. 24 February 2022

   Added 'UK strategy for rare diseases: 2020 update to the implementation plan for England' to the document collection.

2. 27 February 2019

   Added 'UK strategy for rare diseases: 2019 update to the implementation plan for England' to the document collection.

3. 28 February 2018

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

4. 29 January 2018

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

5. 17 February 2017

   Added information on UK Rare Diseases Policy Board.

6. 29 February 2016

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

7. 26 March 2015

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

8. 4 March 2015

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

9. 4 July 2014

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

10. 28 February 2014

    First published.