It will help ensure the
efficient use of scarce expertise, and the targeted use of health care resources to maximise the benefits for all patients and families affected by rare disease across the UK

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Early Day Motion 914

On the 26th February, Dr Evan Harris MP tabled the following Early Day Motion:

That this House acknowledges the second Pan-European Rare Disease Day on 28 February 2009, which successfully highlights rare diseases and the challenges faced by patients, carers, healthcare professionals and policy makers, working to ensure the highest quality of services and available treatments are accessible to often isolated and vulnerable people; notes that there are over 6,000 rare conditions identified, affecting more than 3.5 million people in the UK; further notes that 75 per cent. of those with a rare condition are children and 30 per cent. die before the age of five years; welcomes the newly-established campaign Rare Disease UK; and urges the Government to move forward with the European Commission's Communciation to create a National Plan for rare diseases.

Rare Disease UK is proud to announce that thanks to the efforts of its members, we have now received over 100 MP signatures in support of the EDM.