Rare disease group says more could be done to support them

28 February 2017

A South Wales support group says more could be done to raise awareness for their illness on Rare Disease Day.

Alan Thomas,  51, is the chairman of Ataxia South Wales which supports people with the condition which is affects balance, speaking and tasks that require co-ordination, like writing.

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.

“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!”

Rare Disease Day is an international event that aims to raise awareness of little known conditions and is celebrated on the last day of February.

In Wales, there are around 150,000 people affected by rare diseases.

Earlier this month the Welsh Government launched a Rare Diseases Implementation Plan for Wales which aims to bring together Welsh Government,  Local Health Boards, local government, education and research communities and industry.

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.

A rare disease is defined as a life-threatening or chronically debilitating disease that affects five or less in 10,000 people.

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.”


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