The charity was founded in 2013 by patients, family members & IPF specialists.

We recognised the need for a national IPF charity focusing on improving the quality of life for patients and funding research.

  • Supporting

    To advocate for patients and to provide support to improve their quality of life and to develop collaborative partnerships to help fund patient-focused support programmes

  • Educating

    To undertake targeted awareness raising of the disease, amongst the medical profession, decision-makers and the wider public

  • Researching

    To support research into improved outcomes and greater understanding of the disease and to champion research programmes

  • Campaigning

    To proactively target parliamentarians, NHS and policy-makers and to represent patient interests with NICE and the NHS and to target symptom recognition in primary care for prompt diagnosis.

Action for Pulmonary Fibrosis > About our charity

Support Groups

A key aim of Action for Pulmonary Fibrosis has been to increase the number of IPF support groups and to make them accessible to as many patients as possible. We have helped to grow the number of patient support groups in the UK from 3 in 2013 to 41 in early 2017. We have a dedicated Support Group Co-ordinator, Lorna McLauchlan, who is actively helping to set up more patient support groups across the UK as we know the educational and emotional support benefits that these groups provide to IPF patients and carers is huge and make such a difference to their lives. Our Trustees, who all have a personal connection to the condition try visit as many as possible.

Giving you a voice

In the last four year APF has become recognised at national level, being consulted on issues relating to IPF, we have presented to a parliamentary respiratory group and contributed to NICE consultations and guidance documents. Our Chair, Karen Hughes represents patients at a national and global level, she is a core part of the European IPF Advocacy Group which has developed a European IPF Patient Charter to be presented to the European Parliament and recently spoke in America at a conference focussed on improving IPF research and care.

Voice of the Patient

In 2016 we created our “Voice of the Patient” Council, placing patients at the heart of the charity. We now have over 30 members – and growing – who represent patients across the UK and help us drive and deliver our work. Our charity Ambassador, and trustee, Tony Gowland, delivers a unique perspective on being an IPF patient and delivers a Voice of the Patient blog series and v-logs.

Raising awareness with the medical profession

The lack of knowledge about IPF amongst the medical profession generally is well recognised and leads to difficulties for many patients when requiring treatment from GPs and local hospitals. There is also a need for more trained ILD nurse specialists. We are a founding sponsor of the newly-formed professional Interstitial Lung Disease nurse network ILD-INN, and we have partnered with them to deliver IPF training sessions to health care professionals in primary care across the UK. The sessions are focused on helping identify early signs of IPF to aid prompt and accurate diagnoses. Action for Pulmonary Fibrosis supports current training and is looking for ways to engage with more non-specialist staff to improve the level of understanding of the disease more widely across the NHS.

Research

We offer travel grants for young researchers in the field of IPF to attend conferencees all over the World. We are committed to funding much needed research towards IPF and we will be making a significant research investment later this year.