Irish Lung Fibrosis Association
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Mission Statement
The Irish Lung Fibrosis Association is Ireland's representative body for people living with lung fibrosis. We engage in advocacy, education, and research and we provide evidence-based information and supports. Our work is focused on three core aims: earlier diagnosis and treatment, affordable disease management, and equitable care.
About This Cause
Lung Fibrosis (or pulmonary fibrosis) is a life-limiting condition that occurs primarily in adults over the age of 65. Diagnosis is often delayed, many patients don’t receive the care they need, and even for those who do, the cost of managing the disease can tip people into financial poverty. The Irish Lung Fibrosis Association (ILFA) was founded in 2002 to honour the memory of Fergus Goodbody who died from Lung Fibrosis. For more than 20 years, ILFA has provided research and education to support earlier diagnosis, advocated for equitable treatment, and filled the gap in public services to help patients and their families manage the high cost of care. We promote change, we challenge current practice, we speak up on behalf of our community, and we collaborate with other patient organisations, alliances, and networks. It is estimated that there are approximately 5,000 people in Ireland living with lung fibrosis, with over 1,000 new cases every year. Data on disease prevalence in Ireland is lacking, however; as there is no national patient registry. Because of its relative rarity, awareness of the disease is low. Symptoms may present quickly or take years to develop. While there continue to be advances in treatment and care, while medications may slow scarring and help preserve lung function and while oxygen therapy and staying active can relieve symptoms and strengthen lung function, lung transplant is the only effective treatment for this disease.