Wales Council of the Blind

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UK Rare Diseases Framework published

The UK Government has published its Rare Diseases Framework, which has been agreed by all four UK nations. As health is a devolved issue, each nation will set out an action plan detailing the steps they will take to meet the aims of the framework within their own arrangements.

The priorities of the framework are:

  • Ensuring patients get the right diagnosis faster
  • Increasing awareness of rare diseases among healthcare professionals
  • Better coordination of care
  • Improving access to specialist care, treatments and drugs
Eye conditions which are considered to be rare diseases include aniridia, birdshot uveitis and Alström Syndrome.

You can read the Framework here.

Rare Disease UK is the charity that provides a united voice for the rare disease community by capturing the experiences of patients and families and works with supporters to raise the profile of rare diseases across the UK. Find out more here.