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How our pulmonary fibrosis work is making a difference

We've made pulmonary fibrosis one of our strategic priorities in England, Scotland, Wales and Northern Ireland.

What we achieved in 2016

Patient voice 

  • Over a quarter of our Patient Think Tank have or care for someone with pulmonary fibrosis. They provide advice and feedback on key strategic decisions, and their ideas help inform all our work from research to media 

Providing information and support

  • We launched our new Living with pulmonary fibrosis booklet explaining what pulmonary fibrosis is, diagnosis and treatments. This booklet has the first clear lay explanation of terminology and classification of ILDs, and a new section on breathing techniques
  • There were over 250,000 visits over the year to our IPF web information. Our new pulmonary fibrosis web hub launched in September 2016 had almost 50,000 visits in three months
  • Our information on living with IPF towards the end of life is now ranking at the top of Google search results internationally for relevant search terms
  • We organised two pulmonary fibrosis support group networking conferences where members shared their valuable experiences and learnt more about running a support group. This reached 64% of local pulmonary fibrosis support groups

Raising awareness and influencing 

  • We generated over 100 new articles on pulmonary fibrosis in the media, with a potential media reach of 180 million
  • We held an ILD care pathway roundtable with 30 experts from across the UK representing specialist ILD services, general practice, patient and family members, commissioners and other pulmonary fibrosis charities
  • Our Welsh team represented the patient perspective in the development of a new ILD service proposal for Wales and campaigned for implementation. This was funded by the Welsh Government in April 2016


  • We published new comprehensive data on IPF which found that 32,500 people are living with IPF in the UK – twice as many as previously thought
  • We’ve funded five new ILD research studies in our financial year 2015-16, including research into singing for breathing and studies to further understand disease mechanisms

Download the full 2016 report (PDF 8.7MB)

You can also download the report as a Powerpoint presentation (5.2MB), or as a PDF (8.7MB).

Previous reports

Here are some of the things we achieved in previous years. 

Support our work

We are always looking for people to help support our work. There are many different ways you can get involved. Something as simple as telling your story to us over the phone or fundraising can have a huge impact. 

Find out more