Research Education Support
Perhaps you could do a once-off fundraising event such as a coffee morning or maybe you would be interested in setting up a local ILFA branch where you live.
You can decide what level of involvement you would like to have. If you are interested in getting more involved ILFA would like to hear from you.
You can contact us via post @ PO Box 10456, Blackrock, County Dublin; via email @ email@example.com or by calling 086 871 5264
Saturday 5th April, the Irish Lung Fibrosis Association (ILFA) hosted a Patient Information Day in the Wellington Park Hotel, Belfast.
Mr Joe Brolly, the renowned GAA All Star, pundit and organ transplant champion, addressed the meeting, saying it "beggars belief" that Idiopathic Pulmonary Fibrosis (also known as lung fibrosis) patients in Northern Ireland do not have access to Pirfenidone, the only drug approved for the condition. Approximately 500 patients in mainland UK have access to the drug, but of more than 100 patients in Northern Ireland eligible to receive the drug, only 15 have been prescribed the medication. Northern Ireland has the highest incidence of lung fibrosis in the United Kingdom. Professor Jim Egan, IPF Specialist at the Mater Hospital in Dublin also spoke at the meeting and explained that up to 100 patients in the Republic have been receiving the drug Pirfenidone, which has been shown to slow the rate of decline in the condition, lung fibrosis.
The Irish Lung Fibrosis Association (ILFA) is an all-Ireland organization focused on supporting and informing patients with Idiopathic Pulmonary Fibrosis (IPF). The ILFA hosted Patient Information Day heard from speakers with varying backgrounds and expertise: - Mr Joe Brolly, GAA All-Start & pundit, and organ transplant champion - Prof Jim Egan, Consultant Respiratory and Transplant Physician, Mater Hospital, Dublin - Dr Joe Kidney, Consultant Physician, Mater Infirmary, Belfast - Noreen Baxter, Specialist Respiratory Nurse, Mater Infirmary, Belfast - David Moore, Specialist Respiratory Nurse, Mater Infirmary, Belfast - Robert Earley, family member of an organ donor.
ILFA also launched 2 new support leaflets for people with pulmonary fibrosis and their carers. Pictured at the launch of the leaflets are: (back l-r) Mr Terence Moran (Chairman of ILFA); Dr Joe Kidney (Respiratory Consultant, Mater Infirmary, Belfast); Prof Jim Egan (Consultant Respiratory and Transplant Physician, Mater Hospital, Dublin); front l-r: Mr Matt Cullen (IPF patient); Mr Joe Brolly (GAA All-Start & pundit, and organ transplant champion); Mrs Theresa Cullen. For more information, please contact Denise Dunne, ILFA +353 86 871 5264. Photograph have been circulated to the picture desk, via Seamus Brady, Event Photography, Belfast
For more information, please contact Denise Dunne, ILFA +353 86 871 5264.
Irish Lung Fibrosis Association Correspondence: PO Box 10456, Blackrock, County Dublin
Enquiries: 086 871 5264
Company registration no. 367940
Charitable exemption number CHY 15462