Rare Disease UK Estimates up to 300,000 People in Scotland's Population May be Affected by a Rare Disease Over Their Lifetime

Scotland’s New Rare Disease Action Plan

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Rare Disease UK Estimates up to 300,000 People in Scotland's Population May be Affected by a Rare Disease Over Their Lifetime

Rare Disease UK Estimates up to 300,000 People in Scotland’s Population May be Affected by a Rare Disease Over Their Lifetime

Following a European Union Council Recommendation on rare diseases, in 2012 the four countries of the UK jointly embarked on a consultation on plans to develop a UK Strategy for Rare Diseases. The consultation outcomes informed the development of the UK Strategy, published on November 20, 2013. To deliver the commitments in the Strategy, each of the four countries agreed to develop their own implementation plan to reflect local health system.

The Scottish Government has set out a new strategy to combat rare diseases. The report, published today, was drawn up following a consultation with patients and clinical experts who were asked for their views on the treatment of rare diseases in Scotland. The report lays out a number of suggestions on how to improve rare disease healthcare services and how to empower those that have been diagnosed with a rare disease. The report also sets out strategies on how to improve prevention and diagnosis of rare diseases, as well as early stage intervention.

Michael Matheson, Minister for Public Health in Scotland, said: “What this report demonstrates is that although these diseases are individually rare, the sheer number of different conditions means that the total number of people affected is surprisingly large.

Although these diseases are individually rare, the sheer number of different conditions means that the total number of people affected is surprisingly largeMichael Matheson, Minister for Public Health

The implementation plan for rare diseases in Scotland has committed to:

  • Strengthen the mechanisms and opportunities for meaningful and sustained patient involvement in rare disease service provision and research
  • Improve awareness amongst service providers and others of the effects that rare diseases can have on a person’s education, family, social relationships and ability to work.
  • Encourage effective and timely liaison between the NHS and other public service providers, and encourage providers to consider the effects of rare diseases on people’s lives when they are developing and managing services.
  • Make sure that patients and their families have a say in decisions about treatment and in the planning, evaluation and monitoring of services
  • Consider how to give all patients with rare disease clear and timely information about: their condition and its development; treatment and therapy options; practical support
  • Improve access for patients (or where appropriate their parents or guardians) to their personal data.
  • Support patients to register on databases, where these exist.
  • Help patients to contribute to research and other activity related to rare diseases.

Read more about it here: The Implementation Plan for Rare Disease in Scotland

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