Many patients with rare diseases experience long waits for diagnoses, survey finds

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Rare Disease Ireland says there is a need to increase resources for genetic services

According to the survey, more than half, or 53 per cent, of diagnosed respondents had been investigated or treated for three or more conditions while seeking a diagnosis.

Of the respondents who received treatment directly for their condition, almost one in five reported that treatment was not available in Ireland due to waiting lists, with 19 per cent identifying Health Service Executive infrastructure or processes and 18 per cent a lack of reimbursement as the principal reasons.

“Patients are waiting too long for a diagnosis and are adding to waiting list numbers as they are referred from consultant to consultant, undergoing a battery of investigations and tests,” she said.

 

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Agreed, I’m two years since falling ill waiting on a Lung Condition diagnosis to be confirmed and due to Covid this has impacted on delays for appointments and scans!

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