Useful links and information

Support Group Newsletter

APF have produced a support group newsletter which has support group news, updates, tips and stories for patients and families. We will be producing two a year.

Download the Spring Edition of the Support Group Newsletter

Specialist ILD centres in England

You may need access to a specialist ILD centre throughout your treatment so it is important to know where these centres are.

View the specialist ILD centres in England

NICE Guidelines on IPF

An IPF Guideline for medical professionals was approved in 2013 which sets out how diagnosis should be carried out and the treatment and management of the disease that patients should expect.

Download the NICE Guidelines on IPF

View the NICE Guidelines on IPF

NICE IPF Quality Standard 2015

In January 2015, NICE, the National Institute for Health and Care Excellence, issued a new quality standard for the care of people who have idiopathic pulmonary fibrosis.

Download the NICE Quality Standard 2015

View the NICE Quality Standard for Idiopathic Pulmonary Fibrosis published January 2015

PDF versions of some of the key sections on our website

Download the Coping with breathlessness section

Download the Oxygen section

Download the Travelling away from home section

Download the Lung transplantation

Download the Hoping for the best planning for the worst by Annette Duck section

Improving care for patients with idiopathic pulmonary fibrosis (IPF) in the UK: a round table discussion

This article is the result of a recent round table discussion held at BMA House chaired by Dr David Thickett. Its purpose was to outline the challenges facing both patients and doctors in managing idiopathic pulmonary fibrosis. A number of recommendations for service development and research have been identified.

View the report

Useful links

Read the European Respiratory Journal article “European IPF Patient Charter: an SOS to the world” by 
Bruno Crestani.

View GP article about Action for Pulmonary Fibrosis on the Journal of Practice Nursing website

You will need to register on the website to access the article.

Useful websites

IPF World

Rare Disease Day

IPF European Patient Charter

Time for IPF

British Lung Foundation

Pulmonary Fibrosis Trust

The ILD Interdisciplinary Network

The ILD Interdisciplinary Network

Pulmonary Fibrosis Foundation USA

Pulmonary Fibrosis Foundation Canada