title: Understanding the priorities for women diagnosed with lymphangioleiomyomatosis: a patient perspective.
abstract: Lymphangioleiomyomatosis (LAM) is a rare lung disease that almost exclusively affects women and develops in about one in 400 000 adult females. The European Lung Foundation worked closely with one of the patient organisations within its network, the European LAM Federation, to raise awareness of LAM at the 2014 European Respiratory Society International Congress in Munich, Germany. In addition, an invitation-only workshop with 45 individuals from 13 countries was held to discuss the priorities for women in Europe living with the disease. The need for ongoing collaboration to improve knowledge of this rare lung condition with healthcare professionals across Europe was highlighted.
authors.affiliation: LAM Italia Onlus, Udine, Italy.
authors.forename: Iris
authors.initials: I
authors.lastname: Bassi
authors.affiliation: LAM Action, Nottingham, UK.
authors.forename: Gill
authors.initials: G
authors.lastname: Hollis
authors.affiliation: Service de Pneumologie, Hopital L. Pradel, Claude Bernard University Lyon 1, Lyon, France.
authors.forename: Vincent
authors.initials: V
authors.lastname: Cottin
authors.affiliation: UO Pneumologia e Terapia Semi-Intensiva Respiratoria - Servizio di Fisiopatologia Respiratoria ed Emodinamica Polmonare, Osp. San Giuseppe - MultiMedica, Milan, Italy.
authors.forename: Sergio
authors.initials: S
authors.lastname: Harari
authors.affiliation: ILD Center of Excellence, St Antonius Hospital, Nieuwegein, The Netherlands.
authors.forename: Elma
authors.initials: E
authors.lastname: Zwanenburg
authors.affiliation: ILD Center of Excellence, St Antonius Hospital, Nieuwegein, The Netherlands.
authors.forename: Marcel
authors.initials: M
authors.lastname: Veltkamp
authors.affiliation: Servicio de Neumología, Hospital Universitario del Henares, Coslada, Madrid, Spain.
authors.forename: Alvaro
authors.initials: A
authors.lastname: Casanova
authors.affiliation: Education for Health, Warwick, UK.
authors.forename: Monica
authors.initials: M
authors.lastname: Fletcher
authors.affiliation: European Lung Foundation, Sheffield, UK.
authors.forename: Sarah
authors.initials: S
authors.lastname: Masefield
authors.affiliation: European Lung Foundation, Sheffield, UK.
authors.forename: Pippa
authors.initials: P
authors.lastname: Powell
authors.affiliation: European Lung Foundation, Sheffield, UK.
authors.forename: Jeanette
authors.initials: J
authors.lastname: Boyd