%0 Journal Article %A Iris Bassi %A Gill Hollis %A Vincent Cottin %A Sergio Harari %A Elma Zwanenburg %A Marcel Veltkamp %A Alvaro Casanova %A Monica Fletcher %A Sarah Masefield %A Pippa Powell %A Jeanette Boyd %T Understanding the priorities for women diagnosed with lymphangioleiomyomatosis: a patient perspective %D 2016 %R 10.1183/23120541.00102-2015 %J ERJ Open Research %P 00102-2015 %V 2 %N 2 %X 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.Patient organisations and @EuropeanLung have surveyed the priorities of people living with LAM http://ow.ly/10gTld %U https://openres.ersjournals.com/content/erjor/2/2/00102-2015.full.pdf