UK Strategy for Rare Diseases

Friday 22nd November 2013 Written Statements

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

The “UK Strategy for Rare Diseases” has been published today.



This strategy is the overarching framework document that sets out a shared strategic vision for improving the lives of all those with rare diseases.

In the UK, one in 17 people—or more than 3 million individuals—will be affected by a rare disease at some point in their life. Rare diseases are a major cause of illness and make considerable demands on the resources of the NHS and other care services.

The document commits each UK country to over 50 actions that will be taken to deliver the vision outlined in the strategy. These actions focus on five main areas:

empowering those affected by rare diseases;

identifying and preventing rare diseases;

diagnosis and early intervention;

co-ordination of care; and

the role of research.

The UK is already at the forefront of research, treatment and care for rare diseases. This strategy will further embed and enhance this reputation to the benefit of patients and the economy.

The “UK Strategy for Rare Diseases” has been placed in the Library. Copies are available to hon. Members from the Vote Office and to noble Lords from the Printed Paper Office. It is also available at:

www.gov.uk/government/publications/rare-diseases-strategy.