- Category: News
Patient Groups join together to form a Federation dedicated to Idiopathic Pulmonary Fibrosis & Related Disorders
Brussels, Belgium, 22 February 2016 - Patient groups from nine European countries have come together to establish the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) in order to defend the interests of European patients with idiopathic pulmonary fibrosis (IPF) through one unified voice. IPF is a progressive, irreversible chronic disease of the lungs,1 with currently no known cure. 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 newly formed federation represents an important landmark for the independent IPF patient groups and is the culmination of their continued fruitful collaboration building on initiatives like the IPF World Week Awareness Campaign and the IPF Patient Charter (www.ipfcharter.org). EU-IPFF will continue to collaborate with relevant medical organisations and bodies to ensure that the Charter recommendations are implemented and leveraged with national and European policy makers.
“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.”
“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.
About the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF)
EU-IPFF is a European federation of national patient associations active in the field of IPF and related disorders. Its mission is to serve as the trusted resource for the IPF community by raising awareness, providing disease education, advancing care, and funding research. EU-IPFF collaborates with physicians, medical organisations, people with IPF, caregivers and policy-makers throughout Europe. Its mission is to defend the interests of IPF patients in Europe, by fighting for equal access to treatment and information and ensuring exchange of information between national patient groups.
About Idiopathic Pulmonary Fibrosis
Idiopathic Pulmonary Fibrosis (IPF) is a progressive, irreversible chronic disease of the lungs.2 The lung tissue; which is normally thin and pliable, becomes thick and scarred over time, this is called fibrosis. The disease is associated with a progressive decline in lung function as the scar tissue prevents oxygen moving properly into the bloodstream.3 As a result of this, the brain and other organs do not get enough oxygen, which leads to initial symptoms such as shortness of breath and chronic cough and can lead to respiratory failure and death.8 There is no known cause for this fibrosis and so this is categorised as ‘idiopathic’.4 There are currently between 80,000 and 111,000 people living with IPF in Europe and approximately 30-35,000 new patients will be diagnosed with IPF in the EU each year5,6,7,8,9. IPF has no cure yet and difficulty in diagnosis and rapid deterioration in some patients means that many people live only about 2 to 5 years after diagnosis.10 Presently, there are two EMA-approved treatments for IPF in Europe.
The EU-IPFF is supported by Boehringer Ingelheim and Roche through a sponsorship or an unrestricted grant respectively.
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1 Navaratnam, V et al, ‘The rising incidence of idiopathic pulmonary fibrosis in the UK’, Thorax, 2011; 66, 462-467
2 Navaratnam, V et al, ‘The rising incidence of idiopathic pulmonary fibrosis in the UK’, Thorax, 2011; 66, 462-467
3 NHS Choices. Pulmonary Fibrosis (idiopathic). Available from: http://www.nhs.uk/conditions/pulmonary-fibrosis/Pages/Introduction.aspx. Accessed: 21 April 2015
4 NHS Choices. Idiopathic Pulmonary Fibrosis. Causes. Available from: http://www.nhs.uk/Conditions/pulmonary-fibrosis/Pages/Causes.aspx. Accessed: 21 April 2015
5 European IPF Patient Charter. Available from: http://www.ipfcharter.org/. Last accessed 21.07.15.
6 Gribbin J, Hubbard RB, LeJeune I, Smith CJP, West J, Tata LJ: Incidence and mortality of idiopathic pulmonary fibrosis and sarcoidosis in the UK. Thorax 2006; 61: 980–985.
7 Navaratnam V, Fleming K, West J, Smith C, Jenkins R, Fogarty A, Hubbard R. The rising incidence of idiopathic pulmonary fibrosis in the UK. Thorax 2011; pp 462-467.
8 Ley B, Collard H, Epidemiology of Idiopathic Pulmonary Fibrosis, Clinical Epidemiology 2013, pp 483-492.
10 Ley B, Ryerson CJ and Vittinghoff EA et al Ann Intern Med 2012 156 684-691