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The UK strategy for rare diseases, 22/11/13 [E/NI/S/W]

The Department for Health has published the UK Strategy for Rare Diseases.

The Strategy contains over 50 commitments to ensure people living with a rare disease have access to the best evidence-based care and treatment that health and social services, working with charities, researchers and industry, can provide.

The UK commitments are in 5 areas:

  • making sure patients and their families and carers have the information they need, are listened to and consulted;
  • developing better methods of identifying and preventing rare diseases;
  • improving diagnosis and earlier intervention for those with a rare disease;
  • developing better coordination of care for those with a rare disease, including joined up consultation and treatment schedules;
  • and building on research to improve personalised approaches to healthcare for those with a rare disease.
At least 80% of rare diseases have an identified genetic origin and 50% of new cases are in children. All four UK countries will work together to achieve these goals but will produce their own plans by February 2014 to help put the strategy into action.

For full details see the Department for Health website.

Further Information

The UK strategy for rare diseases