PEOPLE WHO ARE affected by rare diseases are being asked to have their say on a new national plan for Ireland.
The government is currently developing Ireland’s first National Rare Disease Plan, with consultation set to end on 13 July. Tony Heffernan, the founder of Bee for Battens, which works to try and save the lives of children with Batten disease and other rare diseases, is calling on people affected by rare diseases to take part in the HSE-backed survey which will form part of the consultation.
Tony, whose daughter died of Batten Disease and whose son also has the rare illness, has said that it’s important for Irish society to do what it can to help people with rare diseases.
“With 6 to 8 per cent of the population affected by a rare disease during their life, it’s not a small section of society,” he said.
The new plan will make recommendations for how to enhance the quality of life of people experiencing rare diseases, including research, diagnosis, treatment and patient empowerment.
The survey can be accessed here.
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