A\u00a0South Wales support group says more could\u00a0be done to raise awareness for their illness on Rare Disease Day.<\/p>\n
Alan Thomas, \u00a051, is the chairman of Ataxia South Wales\u00a0which supports people with the condition which is affects balance, speaking and tasks that require co-ordination, like writing.<\/p>\n
He says “As a small group we don’t get support from local council authorities or the Welsh Government but it is something we want.<\/p>\n
“Despite this, is really good that awareness is being raised, as how can we expect researchers to look in to a cure no one has heard of!”<\/p>\n
Rare Disease Day is an international event that aims to raise awareness of little known conditions\u00a0and is celebrated on the last day of February.<\/p>\n
In Wales, there are around 150,000 people affected by rare diseases.<\/p>\n<\/div>\n
Earlier this month the Welsh Government\u00a0launched a Rare Diseases Implementation Plan for Wales which\u00a0aims to bring together\u00a0Welsh Government, \u00a0Local Health Boards, local government, education and research communities and industry.<\/p>\n
The plan aims to make sure all patients receive treatment that is centred on individual patients for people of all ages, wherever they live in Wales, whatever their circumstances.<\/p>\n
A rare disease is defined as a life-threatening or chronically debilitating disease that affects five or less in 10,000 people.<\/p>\n
Rare Disease UK say “We hope the day will help to raise awareness of rare diseases among hundreds of thousands of people, as well as policy makers and parliamentarians.”<\/p>\n<\/div>\n
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