Rare diseases strategy

January 2017

General Practitioners

Country of origin: UK

The ‘UK Strategy for Rare Diseases’ Sets out a shared vision for the UK to improve the lives of those with rare diseases.

It 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
• building on research to improve personalised approaches to healthcare for those with a rare disease

All 4 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.

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