People with rare diseases in Ireland can face '10-year wait', report reveals
It highlights the struggle faced by many of the 300,000 people in Ireland with a rare disease
People with a rare disease can wait 10 years for a diagnosis, with some patients undergoing harmful treatments before discovering their condition, a report reveals today.
It highlights the struggle faced by many of the 300,000 people in Ireland with a rare disease amid long delays to get genetic tests, with a waiting list of more than 4,000 and a lack of specialist care.
The survey was carried out by Rare Diseases Ireland and the findings are revealed in a new report Rare Reality: Living with a Rare Disease in Ireland - Healthcare Experiences.
The survey of 111 people showed:
Almost one-third of people said there was no specialist in Ireland with the requisite expertise.
Around 72pc of rare diseases are genetic in origin, and 7pc start to show up in childhood.
At least 3.5pc of children in Ireland are diagnosed with a rare disease by age 15. Almost six in 10 childhood deaths are associated with rare diseases.
Commenting, Rare Diseases Ireland chief executive Vicky McGrath said that the failure to appoint someone to the role of HSE National Director of National Genetic and Genomic Medicine "is enormously frustrating".
Only four of the six available consultant geneticist roles at Children's Health Ireland at Crumlin are currently filled.
"The effect of these vacancies is clear with 4,029 on the clinical medical genetics waiting list," she added.
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