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Nessa Childers MEP wants to see specialist support for those with rare diseases

Press Release

Friday 28 Feb 2014

This morning Independent MEP Nessa Childers is once again reiterating her calls for a specialist national action plan for rare diseases – a move that will improve the lives of thousands of Irish people, especially children.
‘Often those with illnesses and conditions that are not commonly observed are simply left behind by the system,’ Ms Childers said. ‘They and their families may have to travel abroad for treatment; they may be told that little can be done; they may feel isolated and confused.
‘The Government should work hard to ensure that there are specific structures and specialist support in place to improve the lives of the thousands of people in this country that have a rare condition.’
Today is Rare Diseases Day. Launched in 2008, it is now an annual event supported by EURORDIS – an organisation described as the voice of 30 million people affected by rare diseases throughout Europe.
About six people in every 100 in this country will be diagnosed with a rare disease – of which there are some 7,000 recognised varieties – and most of these will be children with a reduced life-expectancy.
‘Just getting a firm diagnosis can be very challenging for some families,’ Ms Childers added. ‘But there are very effective programmes in other countries that I would like to see implemented similarly in Ireland.
‘Something as simple as sharing specialist information or access to a central database of test results can be cost-efficient ways of addressing this issue.’