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UK strategy responds to needs of patients

rare disease great ormond street
rare disease great ormond street

Four nations of the UK have come together to recognise and respond to the needs of rare disease patients with a systematic approach.

The document was drawn up for the Department of Health by an expert group of stakeholders including our Chair, Alastair Kent OBE. The UK Strategy not only works with health services, but also with the third sector, researchers and industry. Successful implementation will result in earlier diagnosis of rare conditions and improved coordination of care.

EU-wide call to governments to research rare diseases

The increased recognition of rare diseases is partly due to an EU-wide call for governments to pay more attention to the treatment of rare conditions. In June 2009, the UK adopted the Council of the European
Union’s Recommendation on an action in the field of rare diseases. This document recommends that member states ‘establish and implement plans or strategies for rare diseases’ and that these should be adopted ‘as soon as possible, preferably by the end of 2013 at the latest’.

UK working to develop an effective strategy

Since this Recommendation was adopted by the UK Government in June 2009, RDUK has been working to ensure that the UK develops a strategy that is comprehensive and effective, and accurately reflects the needs of the rare disease community.
Previously, rare diseases have been overlooked and NHS resources have not been used effectively in this arena. Individually, rare conditions maybe rare but collectively over 3 million people in the UK are affected by a rare condition at some point in their life. Publication of the UK Strategy for Rare Diseases marks the first time this area has achieved an appropriate profile. Patients can now have a clear expectation of what the NHS aspires to provide for them, wherever they live in the UK. This is a huge step forward, and we are pleased to see that the key features of the UK Strategy include:

  • A clear personal care plan for every patient that brings together health and care services, with more support for them and their families
  • Patient centred, coordinated approach to treatment services, specialist healthcare and social care support
  • Evidence-based diagnosis and treatment of rare diseases;
  • Help for specialised clinical centres to offer the best care and support
  • Better education and training for health and social care professionals to help ensure earlier diagnosis and access to treatment
  • Promoting the UK as a world leader in research and development to improve the understanding and treatment of rare diseases

There are 51 recommendations in the UK Strategy for Rare Diseases which all four countries of the UK have committed themselves to deliver by 2020.

Since the publication of the UK Strategy, Rare Disease UK has been working with key stakeholders responsible for implementing the Strategy in the devolved nations. We are pleased with the progress that each home nation has made towards their implementation plans and look forward to the publication of their responses in time for Rare Disease Day.

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