In February 2016, 11 patient groups from nine European countries came together to establish the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) in order to defend the interests of European patients with IPF through one unified voice. EU-IPFF will push forward the IPF agenda at European level by improving patient access to treatment, increasing disease awareness, and advocating for research into new treatment options.
The official establishment of the federation represented an important milestone for the individual IPF patient groups and is the culmination of their continued fruitful collaboration on initiatives like the IPF World Week Awareness Campaign [link to www.ipfworld.org] and the IPF Patient Charter.
“I am proud to see all of our efforts from the past years coming to fruition. We have worked together extensively on the Charter, and EU-IPFF demonstrates our commitment to IPF patients in Europe. We want to continue working towards making a difference for patients and families across Europe,” said Carlos Lines Millàn, President of EU-IPFF.
Spearheaded by Italian Member of the European Parliament Elena Gentile, EU-IPFF will present a Written Declaration to Members of the European Parliament (MEPs) to raise further awareness of IPF, and launch a broader debate on rare diseases. “This is a great opportunity for a newly founded federation, such as EU-IPFF. Together we can work to achieve political support for a less known disease such as IPF” said MEP Elena Gentile. “It will be a great opportunity for EU-IPFF to build further political momentum in the European Parliament but also at a national level.”
Can you include a short paragraph here, just saying that the official signing ceremony took place at the EP on 22 February, attendance of MEPs, HCPs, sponsors and other relevant stakeholders, Federation’s statutes were signed by all founding members, etc.
“The federation looks forward to many exciting and productive years ahead. We hope that our initial Charter recommendations will be implemented at a European and national level,” said Carlos Lines Millàn, during the official Federation inauguration ceremony.