EU-IPFF and Three Lakes Partners Organise Global Advocacy Meeting During ERS Congress in Milan
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The European Idiopathic Pulmonary Fibrosis and Related Disorder FederationSep 10, 2017, 11:56 ET
MILAN, September 10, 2017 /PRNewswire/ --
The European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) together with Three Lakes Partners today has kicked off a multi stakeholder dialogue on a global initiative of the IPF community on catalysing international efforts to improve the quality of life of IPF patients and caregivers.
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(Logo: http://mma.prnewswire.com/media/554015/Three_Lakes_Partners_Logo.jpg )
The thought-provoking discussion, organised on the side lines of the European Respiratory Society (ERS) Congress in Milan, saw the participation of a diverse group of patient groups, healthcare professionals, industry representatives and international organisations active in IPF. Stakeholders shared their own inspiring ideas and best practices that will make a difference for IPF patients and promote better understanding and awareness of IPF from around the world.
Encouraged by the stimulating atmosphere, participants agreed to join global efforts in raising awareness around IPF with the ultimate aim of drawing the attention of the general public and policy makers to this devastating disease. With today's meeting, the IPF community has laid the foundation for the creation of a dedicated social network aiming to scale up successful best practices and further amplify the already marvellous efforts made by patient groups and their partners around the globe.
EU-IPFF and Three Lakes Partners are excited to continue their fruitful collaboration in the future to ensure that therapeutic and diagnostic advances in the field of IPF will be delivered to the benefit of patients and their families.
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 http://www.eu-ipff.org
About Three Lakes Partners
Three Lakes Partners is a venture philanthropy organisation created specifically to support the fight against IPF. Their mission is to accelerate the development of promising technologies through targeted investments and gifts, and by incentivizing collaboration at every juncture. TLP aims to improve patient and caregiver quality of life, drive early diagnostic advances and help to enable meaningful therapeutic discoveries.
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,[email protected]
Elizabeth Estes, Chief Marketing Officer, Three Lakes Partners,[email protected]
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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.
SOURCE The European Idiopathic Pulmonary Fibrosis and Related Disorder Federation
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