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Rare diseases implementation plan

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A rare disease is defined as a life-threatening or chronically debilitating disease that affects five people or less per 10,000.

There are around 150,000 people affected by these diseases in Wales.

The plan sets out actions for Welsh Government,  Local Health Boards, NHS Trusts and their partners in

  • local government
  • the third sector
  • the education and research communities
  • industry.

It sets out our expectations of the NHS in Wales to treat rare diseases for people of all ages, wherever they live in Wales and whatever their circumstances. The plan has been developed in line with our support for the UK Strategy for Rare Diseases – a commitment to a patient centred, co-ordinated approach.

The first UK annual report has been published from the UK Rare Disease Forum. The report details the progress made throughout the UK since the publication of the strategy.