MP hears from rare disease sufferers (From Hereford Times)

MP hears from rare disease sufferers

4:02pm Saturday 1st March 2008 in

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HEREFORD MP Paul Keetch has been talking to sufferers of rare diseases to try and meet their needs better.

More than 150 visited Westminster on Tuesday (February 26) to discuss possible UK and EU policy developments.

Mr Keetch said: "Although the UK does have specialist commissioning for some rare diseases it is not accessible by all and patients with rare conditions.

"It is vital my constituents in Hereford with rare diseases are able to access the appropriate health services and I commended the work of the patient groups in this area."

The parliamentary reception marked Europe's first Rare Disease Day held yesterday (February 29) highlighting more than 8000 identified rare conditions affecting around 3.5million people countrywide.

Mr Keetch added: "For patients with very rare diseases, and their families who are particularly isolated and vulnerable, a day focussed on rare diseases can bring hope, as well as information to these individuals."