Charities and Organisations

Action for Pulmonary Fibrosis

Action for Pulmonary Fibrosis (APF) are a leading charity specifically dedicated to improving the quality of life for patients living with pulmonary fibrosis and idiopathic pulmonary fibrosis. APF focus on support, education, research funding and campaigning.

APF have a support line for information or advice on living with pulmonary fibrosis.

Pulmonary Fibrosis Trust

The Pulmonary Fibrosis Trust provide practical, emotional and financial support where there is a need to those living with pulmonary fibrosis. They also raise awareness of the illness and in particular the challenges people face on a daily basis.

They are the only charity to date which offers short breaks for PF sufferers and their families in the UK.

The British Lung Foundation supports the nationals lung health, including PF and IPF. They launched a new IPF Support Service in 2019 for patients and family.

European Idiopathic Pulmonary Fibrosis  and Related Disorders Federationn (EU-IPFF) is a non-profit organization that brings together European national patient associations committed to defending their vision of equal access to treatment and care for all IPF patients.

They serve as a trusted resource for the IPF community by raising awareness, providing disease education, advancing care, and supporting research for IPF whilst defending the interests of IPF patients at European level.

Pulmonary Fibrosis Foundation is an American non-for profit organisation that provides support to those living and working with pulmonary fibrosis.

The British Thoracic Society is professional network of nurses, doctors, physiotherapists and scientists working to champion excellence in the diagnosis, treatment and care of people with lung disease and those delivering it; to influence NHS policy and services to help reduce the health and economic burden of lung disease; and to work with, and support, individuals and organisations across the NHS and beyond who share our vision.

European IPF Registry (eurIPFreg) has become Europe’s leading database of longitudinal data from IPF patients, including control groups of patients with other lung diseases.

The registry was initiated with the intention of creating a permanent and continuously growing record of well defined data on IPF in Europe, in order to increase the chances of finding better treatment options for this devastating disease.

The National Institute for Health and Care Excellence  (NICE) produces UK guidelines covering diagnosis and management of idiopathic pulmonary fibrosis.

It aims to improve the quality of life for people with idiopathic pulmonary fibrosis by helping healthcare professionals to diagnose the condition and provide effective symptom management.

The NHS provides current advice and information on Idiopathic Pulmonary Fibrosis for those living with the condition in the UK.