TABLE 2

Patient advocacy groups (PGs) involved in the development of the European IPF Patient Charter

PGCountryDate of foundationWebsiteNo. of representatives interviewedNo. of representatives at Working Group meeting
LOT mit Lungenfibrose Forum-AustriaAustria2009#www.lungenfibroseforum.at1 male patient with IPF
Belgische Vereniging voor Longfibrose VZWBelgium2010www.longfibrose.org1 male patient with IPF, lung transplant in 2010
Association pour la fibrose pulmonaireFrance2011NA1 female, previously cared for a spouse with IPF
Lungenfibrose eVGermany2012www.lungenfibrose.de1 female with non-IPF lung fibrosis
Irish Lung Fibrosis AssociationIreland2002www.ilfa.ie2 females, both previously cared for a spouse/parent with IPF1 female, previously cared for a spouse with IPF
AMA Fuori Dal BuioItaly2004www.fuoridalbuio.it1 female
Asociación de Familiares y Enfermos de Fibrosis Pulmonar Idiopática (AFEFPI)Spain2008www.fibrosispulmonar.es1 female, 1 male
Action for Pulmonary FibrosisUK2013www.actionpulmonaryfibrosis.org1 male patient with IPF, lung transplant in 2005
British Lung FoundationUK1984www.blf.org.uk1 male
Longfibrose  PatiëntenverenigingNetherlands2001www.longfibrose.nl1 female
1 female
LongfondsNetherlands1959www.longfonds.nl

  • IPF: idiopathic pulmonary fibrosis; NA: not applicable. #: LOT was formed in 2009, LOT mit Lungenfibrose was formed in 2015; : the same participant represented both the Longfibrose Patiëntenvereniging and Longfonds PG organisations.