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.

Resources

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Launch of the Case Studies Pinboard January 2017 The Case Studies Pinboard, part of The Learning Environment for commissioners, is available. Developed in response to...
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GP morale damaged by workload, says survey January 2017 A BMA survey, published recently, shows the effect increasing workload is having on GP morale and, in turn, the potential...
Guidance on standards for GP specialty training January 2017 Guidance on standards for GP specialty training have been released by the Royal College of GPs (RCGP) and the Committee of...
Rare diseases strategy January 2017 The ‘UK Strategy for Rare Diseases’ Sets out a shared vision for the UK to improve the lives of those with rare...
RCGP TARGETs antibiotics prescribing December 2016 The RCGP has launched a toolkit containing new guidance for GPs and their patients on the appropriate prescription of...
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