EU-IPFF works together to change the landscape of IPF in Europe.
The activities we undergo vary from policy to patient centric tools


Policy


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.

For more information on our work with the European institutions, please check the Breathing Hope blog.

Patient Tools


 
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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.

 

 

 

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.

To find out more information visit www.ipfcharter.org
and sign the Charter!

 

Advocacy


 

IPF World Week 

Every year, IPF patient groups, patients, families and friends come together for a week of raising awareness and supporting the IPF cause. The mission is to create a national and international network of people working to support patients with IPF. A “Breath of Hope” is the key slogan for IPF World Week, represented by blowing soap bubbles, a joyful activity yet a difficult task for those suffering from IPF. The Breath of Hope Campaign aims to raise awareness of IPF, while encouraging the importance of lung fitness and health.

Learn more at www.ipfworld.org