TY - JOUR T1 - Understanding the priorities for women diagnosed with lymphangioleiomyomatosis: a patient perspective JF - ERJ Open Research JO - erjor DO - 10.1183/23120541.00102-2015 VL - 2 IS - 2 SP - 00102-2015 AU - Iris Bassi AU - Gill Hollis AU - Vincent Cottin AU - Sergio Harari AU - Elma Zwanenburg AU - Marcel Veltkamp AU - Alvaro Casanova AU - Monica Fletcher AU - Sarah Masefield AU - Pippa Powell AU - Jeanette Boyd Y1 - 2016/04/01 UR - http://openres.ersjournals.com/content/2/2/00102-2015.abstract N2 - 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 ER -