The wait time for genetic services in the Republic is over a year and a half longer than Northern Ireland.
Rare Disease Ireland say a severe shortage of staff and services means some children are forced to wait two years compared to three months in the North.
The group say around 300,000 people are living with a rare disease in Ireland and are briefing members of the Oireachtas about their concerns today.
Julie Sweeney’s son Connor was diagnosed with a rare genetic condition when he was six.
The mother from Mallow told RedFM News that some families are forced to pay privately for services:
"If the child needs ongoing regular therapy, the only option really to parents is private therapy. We are lucky that Connor has health insurance. I was recently speaking to a family. They can't get access to health insurance because the child got a diagnosis and they haven't had health insurance, they find themselves in the unfortunate position where they can't take out health insurance cover. They're left trying to cover cost therapies privately which is astronomical."
