We work to raise awareness

Pulmonary Fibrosis Awareness - in general

Pulmonary Fibrosis (PF) is a progressive, irreversible, chronic lung disease causing scarring of the lung tissue with no known cure. About 400,000 people in Europe live with Pulmonary Fibrosis and some 100,000 patients die each year from the disease. The most common type of PF is IPF (Idiopathic Pulmonary Fibrosis), accounting for 200,000 patients in Europe. On average, PF patients die within 3–7 years of diagnosis.

EU-IPFF works in various ways to raise awareness of Pulmonary Fibrosis. We conduct awareness campaigns, develop material for carers, doctors and patients, arrange summits and webinars leading up to the summits with professionals and specialists sharing their research, thoughts, knowledge and enthusiasm to really make a difference for people affected by PF.

Awareness activities

Campaigns

PF Awareness Month Campaigns - annually in September

Webinars

A series of EU-IPFF webinars as run ups to the Annual Patient Summit. Everybody can join to meet professionals presenting and discussing the most relevant topics.

Patient Summits

Bringing together patients, healthcare professionals, policy makers and industry representatives.

Benchmarking Report

The EU-IPFF have developed two editions of its benchmarking report to compare diagnistics, treatment and care of PF patients all over Europe.

The consultation guide

We develop material for doctors, health care professionals carers and patients. In 2022 we updated and reproduced our Consultation Guide. We now have a guide targeted to patients and one targeted to health care professionals.

IPF Charter

The aim of the Patient Charter, a patient–physician initiative, was to develop better care based on perceptions of patient advocacy groups regarding inequalities and unmet needs in IPF care