Action for Pulmonary Fibrosis

www.actionpulmonaryfibrosis.org

Action for Pulmonary Fibrosis (APF) was set up in 2013 by a group of patients, family members, carers and medical specialists to provide support for patients diagnosed with the devastating terminal lung disease Idiopathic Pulmonary Fibrosis. IPF kills 5,000 people in the UK every year – more than die from leukaemia and many other cancers – but it doesn’t have a high profile and is poorly understood. It is estimated that more than 30,000 people in the UK are affected The cause is unknown (idiopathic) and life expectancy is often worse than for lung cancer with more than half of sufferers dying within three and five years of diagnosis. The condition is characterised by a build-up of scar tissue in the lungs leading to shortness of breath and eventual respiratory failure. Our work focuses on four mains areas; firstly by supporting patients with information and access to a local support group and championing their needs. Secondly, by educating healthcare professionals about the importance of early diagnosis and helping them know how to deliver the best care and treatments for patients. Thirdly, through research; we have launched the Mike Bray IPF Research Fellowship which is a £300,000 grant that will fund major IPF research, in memory of our founder and former chairman, who sadly passed away earlier this year. Lastly, through campaigning. We proactively target parliamentarians, the NHS and policy-makers to represent patient interests. Our Vision: A world in which everyone living with pulmonary fibrosis has a better future; with your help we can make this happen.

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Action for Pulmonary Fibrosis (APF) was set up in 2013 by a group of patients, family members, carers and medical specialists to provide support for patients diagnosed with the devastating terminal lung disease Idiopathic Pulmonary Fibrosis. IPF kills 5,000 people in the UK every year – more than die from leukaemia and many other cancers – but it doesn’t have a high profile and is poorly understood. It is estimated that more than 30,000 people in the UK are affected The cause is unknown (idiopathic) and life expectancy is often worse than for lung cancer with more than half of sufferers dying within three and five years of diagnosis. The condition is characterised by a build-up of scar tissue in the lungs leading to shortness of breath and eventual respiratory failure. Our work focuses on four mains areas; firstly by supporting patients with information and access to a local support group and championing their needs. Secondly, by educating healthcare professionals about the importance of early diagnosis and helping them know how to deliver the best care and treatments for patients. Thirdly, through research; we have launched the Mike Bray IPF Research Fellowship which is a £300,000 grant that will fund major IPF research, in memory of our founder and former chairman, who sadly passed away earlier this year. Lastly, through campaigning. We proactively target parliamentarians, the NHS and policy-makers to represent patient interests. Our Vision: A world in which everyone living with pulmonary fibrosis has a better future; with your help we can make this happen.

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City (Headquarters)

Peterborough

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Employees

1-10

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Founded

2013

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Social

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Potential Decision Makers

  • Patient and Public Involvement and Engagement Lead

    Email ****** @****.com
    Phone (***) ****-****
  • Singing for Breathing Workshop Leader

    Email ****** @****.com
    Phone (***) ****-****
  • Member Board of Trustees

    Email ****** @****.com
    Phone (***) ****-****

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