What we do
Our Mission & Goals

Patient advocacy, creating awareness, supporting national patient organisations and promoting and fostering Pulmonary Fibrosis research in Europe and beyond – as a European umbrella organisation, we use all the tools at our disposal and continue to look for new means of influence, with the ultimate aim of providing Pulmonary Fibrosis patients, their families and carers with timely and better access to diagnosis, care and treatment, and to help open new avenues in research and development in this disease area. Below you can see at a glance the goals and activities of the Federation. 

Our Goals

Promoting access to accurate and
unbiased information on PF care

Facilitating information exchange and collaboration between European and international PF patient associations

Our Goals

Advocating for the rights of PF patients as well as carers, and the involvement of patients in key healthcare decisions

Fostering collaboration with scientific experts and medical societies

Improving access to treatment and services, including non-pharmacological treatment and medication across European countries

Supporting the establishment of patient associations in countries where there is no representation

What we do at a glance

European PF Patient Summits

The first virtual PF Patient Summit took place from 23-25 April 2021 bringing together patients, healthcare professionals, policy makers and industry representatives.

Advocate Development Programme

A oneyear training programme for patient advocates designed to enable them to become influential patient experts and advocate more effectively on behalf of their communities.

EU-PFF Summit Webinars

A series of free webinars leading up to the European PF Patient Summit, covering a wide range of relevant topics in Pulmonary Fibrosis. 

The EU-PFF Consultation Guides

Two separate guides on living with and treating Pulmonary Fibrosis, each available as both PDFs and videos. 

Annual PF awareness campaigns

Annual campaigns since 2017 to raise awareness of Pulmonary Fibrosis during PF Awareness Month in September. 

Member training on access & policy

To ensure that EU PFF members  understand the benchmarking report and, through their national organisations, can use it in their local policy work.


The EU-PFF Adherence Project

A Europe-wide survey on treatment adherence in patients suffering from Pulmonary Fibrosis.

Annual Reports, Finances & Articles of Association