Action for Pulmonary Fibrosis
Non-Profit - LICHFIELD, LICHFIELD, UK
Action for Pulmonary Fibrosis Employees
Action for Pulmonary Fibrosis Details
Action for Pulmonary Fibrosis is a UK national charity focusing on Pulmonary Fibrosis and was set up in 2013. Its three main aims are to support patients to improve their quality of life, to undertake targeted awareness raising of the disease, among the medical profession, authorities and the wider public and to support research into improved outcomes and greater understanding of the disease. PF is a little known rare disease. In some cases contributory environmental causes can be identified but in many cases there is no known cause. This is referred to as Idiopathic Pulmonary Fibrosis or IPF. The disease attacks the air sacs in the lungs which affect oxygen transfer thus making breathing increasingly difficult. With very limited treatments and no cure it condemns patients to a very limited and distressing future. Until recently most patients, when diagnosed, had never heard of the disease and had little useful information available to them. Family members and carers also find their lives significantly affected when a parent or relative is diagnosed and feel helpless and very often isolated. It is on the increase, generally affects more men than women and is usually diagosed in middle age. Although progression of the disease varies the median survival rate from diagnosis is 3 to 5 years. Action for Pulmonary Fibrosis assists the setting up of support groups around the country and provides clear and accurate information for patients and their families as well as working to increase the understanding of the disease amongst the medical profession. We also aim to raise significant funds to increase the research into more effective treatments and ultimately to find the cause of IPF.
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