PT - JOURNAL ARTICLE AU - Bassi, Iris AU - Hollis, Gill AU - Cottin, Vincent AU - Harari, Sergio AU - Zwanenburg, Elma AU - Veltkamp, Marcel AU - Casanova, Alvaro AU - Fletcher, Monica AU - Masefield, Sarah AU - Powell, Pippa AU - Boyd, Jeanette TI - Understanding the priorities for women diagnosed with lymphangioleiomyomatosis: a patient perspective AID - 10.1183/23120541.00102-2015 DP - 2016 Apr 01 TA - ERJ Open Research PG - 00102-2015 VI - 2 IP - 2 4099 - http://openres.ersjournals.com/content/2/2/00102-2015.short 4100 - http://openres.ersjournals.com/content/2/2/00102-2015.full SO - erjor2016 Apr 01; 2 AB - 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