EU-IPFF mobilises the IPF Patient Community to launch a joint awareness campaign on early signs and symptoms of IPF

31.08_SLOGAN.jpg

Milan, Italy, 9 September - The European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) is proud to announce the launch of the “Listen for the Sounds of IPF” Campaign, a global awareness effort on better and earlier diagnosis of IPF that was developed in collaboration with 24 IPF organisations from across the globe.

As a rare disease, IPF is often misdiagnosed or mistaken for other pulmonary diseases. To avoid delayed or faulty diagnosis, it is crucial that general practitioners understand and recognise the manifestations of IPF and refer the patient to a respiratory specialist as soon as possible. Together with a multidisciplinary team, the specialist can devise a personalised treatment plan for the patient, which can potentially slow the decline in lung function, boost the patient’s quality of life and improve prognosis.

To ensure better diagnosis and expedite access to treatment, the one-year long campaign highlights the importance of recognising early signs and symptoms of IPF and of accelerating referral to a respiratory specialist. It further aims to raise awareness around IPF and increase the understanding of the ideal IPF diagnostic path.

Launched on the opening day of the European Respiratory Society (ERS) Congress, IPF organisations will organise local campaign eventsduring IPF World Week and Pulmonary Fibrosis Awareness Month in September 2017.

Today, EU-IPFF is present at the ELF World Village to share the key messages of the campaign on the importance of early and accurate diagnosis.

 ***

About the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF)

 EU-IPFF is made up of 14 patient organisations from ten European countries and is the first such pan-European organisation. 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. EU-IPFF aims 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. For further information, please visit www.eu-ipff.org

 

About Idiopathic Pulmonary Fibrosis

Idiopathic Pulmonary Fibrosis (IPF) is a rare, long-term, progressive disease that affects the fragile tissue in the lungs. It leads to a gradual, persistent decline in lung function.[1] IPF typically occurs in people who are more than 45 years of age, and the average patient age is 65.[2] The disease is more common in men than women.[3] About 110,000 people in Europe have IPF, and 35,000 new patients are diagnosed each year.[4] The disease is irreversible, and without treatment, half of IPF patients will die within 2-5 years of diagnosis.[5]

 

The EU-IPFF receives sponsorship from Boehringer Ingelheim and Roche. 

 

Media Contact

For media inquiries please contact:

Marina Sardone

secretariat@eu-ipff.org

 

 

[1] L. Nalysnyk, J. Cid-Ruzafa and P. Rotella, “Incidence and prevalence of idiopathic pulmonary fibrosis: review of the literature,” Eur Respir Rev, vol. 21, no. 126, pp. 355-361, 2012.

[2] J. Cordier and V. Cottin, “Neglected evidence in idiopathic pulmonary fibrosis: from history to earlier diagnosis,” Eur Respir J, vol. 42, p. 916–923, 2013.

[3] E. Meltzer and P. Noble, “Idiopathic pulmonary fibrosis,” Orphanet, March 2008. [Online]. Available: http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN& data_id=7029&Disease_Disease_Search_diseaseGroup=Idiopathic-pulmonary-fibrosis& Disease_Disease_Search_diseaseType=Pat&Disease(s)/. [Accessed 13 April 2017].

[4] IPF World, “European IPF Charter,” [Online]. Available: http://www.ipfcharter.org/. [Accessed 21 July 2015].

[5] B. Ley, C. Ryerson and E. Vittinghoff, “A multidimensional index and staging system for idiopathic pulmonary fibrosis,” Ann Intern Med, vol. 156, no. 10, pp. 684-691, 2012.