Patient Tools

Advocacy

Written Declaration 

In April 2016, a Written Declaration on IPF was launched with the support of 16 Members of the European Parliament (MEPs). The Declaration aims to promote better cooperation between EU Member States to address existing health inequalities and promote research activities to find its cause and a cure. It encourages the European Commission and EU Member States to work together to support timely access to treatment, to limit the delays in approval by national regulators of authorised medication, and to address the existing inequalities in access to lung transplantation.

Collaboration With Policy-Makers

It is of essence for the IPF community to build strategic relationships on both a European level and a national level, therefore MEP one-on-one meetings as well as roundtable discussions have proven to be of great value. For the past years, our national IPF patient groups have met with their local MEPs during parliamentary workshops to build relationships that would have a lasting impact in their country. In addition, together as EU-IPFF we are currently building relationships with both the European Commission and European Council.
 

EU-IPFF Benchmarking Report

This 2018 EU-IPFF Benchmarking Report on Access to IPF Care in Europe is an important accomplishment for our community. 

The comparison of care standards identifies best practices to be encouraged and gaps to be filled, as well as proposing concrete solutions to improve patients’ quality of life. The resulting conclusions will propel policy asks to ensure a high level of quality care across Member States. Ultimately, we hope that this report can inform decision-making at every level
 

The EU-IPFF Consultation Guide

If you’ve recently been diagnosed with Idiopathic Pulmonary Fibrosis (IPF), you probably have a lot of questions. These might be about the disease, about your diagnosis and treatment options, or about how IPF will affect your day-to-day life. You may also be scared, worried, angry, or confused. To help our fellow patients, EU-IPFF in close consultation with its Scientific Advisory Board, has developed a comprehensive IPF Consultation Guide, which hopefully will be able to answer some of your questions.

European IPF Patient Charter

In September 2014, 11 European IPF patient groups from 10 different countries worked together to establish the first European IPF Charter. The Charter calls for greater awareness of IPF and equal access to care throughout Europe. The Charter lays down recommendations, if adopted, would ensure improvements in IPF patients’ quality of life, whilst supporting efforts to find a cure. The aim of the Charter is to gather 35,000 signatures, equivalent to the amount of newly diagnosed IPF patients per year in Europe.