Date:21 November, 2013

UK Strategy for Rare Diseases

The long-awaited UK Strategy for Rare Diseases has now been published.

Key features of the Strategy include:  

  • a clear personal care plan for every patient that brings together health and care services, with more support for them and their families
  • help for specialised clinical centres to offer the best care and support
  • better education and training for health and social care professionals to help ensure earlier diagnosis and access to treatment
  • promoting the UK as a world leader in research and development to improve the understanding and treatment of rare diseases 

To achieve the UK-wide vision for rare diseases, there are 51 recommendations which all four countries of the UK have committed themselves to. 

You can read them here: https://www.gov.uk/government/publications/rare-diseases-strategy

Health Minister Lord Howe said:

‘For the first time, we are strengthening the links between research and the treatment and care of patients with rare diseases. This is about putting those patients first, with better diagnosis, treatment and support for them and their families.’  

Rare Disease UK have responded in a press release which is available at http://www.raredisease.org.uk/documents/Website%20Documents%20/rduk-strategy-press-release.

They state that their focus now shifts to a national level to ensure the ambitions of the UK Strategy for Rare Diseases are achieved. This will mean working with all of the health departments and national health services in the devolved nations to help turn the Strategy into a reality.