Information about the UK Strategy for Rare Diseases and how it will be implemented.
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 UK country will take action and develop plans to implement the strategy that best meet 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 and is working closely with the Department of Health, the 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
- see Scotland’s implementation plan
- see Wales’ implementation plan
- see Northern Ireland’s implementation plan
Monitoring implementation of the Strategy
The UK Rare Diseases Policy Board co-ordinates policy development across the 4 nations of the UK.
As well as supporting policy development and implementation, the Policy Board will consider how the strategy could be improved by using wider outputs from the genomics and rare diseases landscape, such as the 100,000 Genomes Project. The Policy Board will work collaboratively with the UK Rare Diseases Forum, which will continue with an extended stakeholder membership.
The Forum’s first progress report is available on the Rare Disease UK website.
The Forum and Rare Diseases Advisory Group will provide opportunities to ensure collaboration between all 4 countries.
Rare disease videos
The Department of Health worked with Health Education England and others to produce 2 videos about rare diseases. These videos tell the story of Lewis, a child diagnosed with a rare disease, and his family
Rare disease: a family’s journey
This video gives information for patients and parents about rare diseases.
Rare disease: the GP’s role
GPs talk about their role as the first point of NHS contact.
Congenital Anomaly and Rare Disease Register
Public Health England are developing the first ever comprehensive national register for rare diseases.
The NIHR is providing a research infrastructure that helps our leading researchers to work in partnership with patients, the NHS, charities and industry to undertake research.
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.
- Policy paper
- Press release
Published: 28 February 2014
Updated: 17 February 2017
- Added information on UK Rare Diseases Policy Board.
- Added link to new UK Rare Diseases Stakeholder Forum progress report.
- Includes information about NIHR research and the national register for rare diseases.
- Added links to 2 videos about rare diseases produced by Health Education England.
- added Northern Ireland’s Statement of Intent for the UK Strategy of Rare Diseases
- First published.
From: Department of Health