EU-IPFF launches the first European Consultation Guide on Idiopathic Pulmonary Fibrosis

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Brussels, Belgium [16 September 2017]: The European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) has today published the first ever European Consultation Guide on Idiopathic Pulmonary Fibrosis (IPF), a rare, progressive and irreversible lung disease that affects over 100,000 people in Europe.

Idiopathic Pulmonary Fibrosis can have a significant impact on patients’ quality of life. Newly-diagnosed patients in particular need reliable, unbiased and accurate information about the disease. To this end, the EU-IPFF’s comprehensive Consultation Guide, compiled by its member organisations in collaboration with scientific experts of international repute, aims to improve patients’ care and strengthen the patient-physician relationship. 

Commenting on the publication of this guide, Liam Galvin, Secretary of the EU-IPFF Secretary, noted that “It can be emotionally challenging for newly-diagnosed IPF patients to discuss IPF and understand how to live with the disease. With this new guide, we hope to provide such patients with all the information they might need in an easily-digestible way.”

While not intended to replace expert medical advice, this Consultation Guide provides educational information on the signs and symptoms of the disease, diagnostic tests, pharmacological and non-pharmacological treatment options, and tips for managing the disease and finding support. The Guide also include patient testimonials and stories from real patients, which may prove comforting or helpful for those learning to accept, and live with, their diagnosis.

The EU-IPFF consultation guide is available as an interactive page on the EU-IPFF website (https://guide.eu-ipff.org/ ) as well as a downloadable PDF in English, Dutch, French, German, Italian and Spanish.

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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]

 

Media Contact

For media inquiries please contact:

Liam Galvin, Secretary of EU-IPFF

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.