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A recent North/South Conference on Rare Diseases in Ireland held in Dublin heard criticism regarding the deficit of adult genetic services in Ireland. A number of participants said adult genetic services should be provided at the new children’s hospital. To date, adult genetic services have been based at the National Centre for Medical Genetics at Our Lady’s Children’s Hospital, Dublin.
However, a Children’s Hospital Group (CHG) spokesperson told the Medical Independent (MI) that there are no plans for such provision.
“The new children’s hospital will include clinical genetics services for children and young people. It is not intended or expected to have adult services provided in the new children’s hospital,” said a CHG spokesperson.
Genetic counsellor Ms Rosemarie Kelly told the rare disease conference that there was no plan for adult genetic provision at the new children’s hospital. “This is something that people have to be very pro-active about. There is no plan for adult genetic provision, but 60 per cent of our referrals are adults.”
Dr Sean Ennis, Director of the University College Dublin Academic Centre of Rare Diseases, and co-founder of Genomics Medicine Ireland, told the conference that funding for genetic research was not much better than for genetics services.
“I can say not only is the funding for diagnostics bad, but also for research,” he told attendees. “Research is a very large part of what is needed to make progress in rare diseases.”
A Department of Health spokesperson said the future development of adult genetic services “will be addressed in the context of the HSE Report of the National Genetic and Genomic Medicine Network Strategy Group (2016), which is under consideration”.
See pages 40-42 for coverage of the North/South Conference on Rare Diseases in Ireland.