22nd November 2013

A new UK wide strategy for rare diseases

The Government has published a UK Strategy for Rare Diseases, setting out how diagnosis, care and support for people across the UK living with rare conditons can be improved and additional research promoted.

This follows a public consultation on the strategy last year, to which we responded to highlight the importance and potential of the strategy those living with rare neurological conditions in the UK.

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

The strategy makes 51 recommendations to which all four countries of the UK have committed themselves to.

You can find out more about the strategy and its implementation by visiting Rare Disease UK.

Back to top