Hundreds of families with inherited conditions who have been waiting up to two years for an appointment at the State’s main genetics centre are being deprived of their entitlement to treatment abroad.
Under an EU directive, Irish people can avail of healthcare in other member states but they have to be on a public waiting list.
Five per cent of the population is affected by genetic disorders and may require testing or counselling in relation to conditions that may be passed on in the family.
Many of the families waiting for appointments in Crumlin are not included on official national waiting lists because of administrative shortcomings.
This means they cannot avail of the option of treatment abroad.
The resourcing of clinical genetics services is fundamental to the diagnosis, care and treatment of people with rare diseases in Ireland, [Philip Watt] said.
“There are an estimated 300,000 people in Ireland affected by rare diseases, yet while most of these conditions are genetic in origin, clinical genetic services in Ireland are significantly behind our EU neighbors.”
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