Longford CF campaigner Jillian McNulty says funds are still desperately needed to fund Cystic Fibrosis facilities and research in this country.
The Longford woman who has campaigned for access to the new life changing CF drugs over recent years says despite the new drugs, there are still a lack of basic facilities for CF patients at many hospitals.
She was speaking today as the public is being asked to donate to Cystic Fibrosis Ireland, on 65 Roses Day - the charity's largest fundraising event. There are one in 19 carriers of the disease in Ireland - the highest per capita worldwide.
Jillian says great strides are being made for people with the condition but there's still a long way to go:
'The drugs are amazing like fantastic and life changing but at the end of the day Cystic Fibrosis .We do not have a cure for it and until we have a cure for it we cannot say that everything is fine .We will still need IV and hospitalizations but like we are a long way off a cure yet .Funds are still desperately still needed for CF and for inpatient beds we still are like lacking in isolation rooms for people with CF in many hospitals.'