Understanding the priorities for women diagnosed with lymphangioleiomyomatosis: A patient perspective

Iris Bassi, Gill Hollis, Vincent Cottin, Sergio Harari, Elma Zwanenburg, Marcel Veltkamp, Alvaro Casanova, Monica Fletcher, Sarah Masefield, Pippa Powell, Jeanette Boyd

Research output: Contribution to journalArticle

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.

Original languageEnglish
Article number00102-2015
JournalERS Monograph
Volume2
Issue number2
DOIs
Publication statusPublished - Apr 1 2016

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Lymphangioleiomyomatosis
Lung
Rare Diseases
Lung Diseases
Germany
Organizations
Delivery of Health Care
Education

ASJC Scopus subject areas

  • Pulmonary and Respiratory Medicine

Cite this

Understanding the priorities for women diagnosed with lymphangioleiomyomatosis : A patient perspective. / Bassi, Iris; Hollis, Gill; Cottin, Vincent; Harari, Sergio; Zwanenburg, Elma; Veltkamp, Marcel; Casanova, Alvaro; Fletcher, Monica; Masefield, Sarah; Powell, Pippa; Boyd, Jeanette.

In: ERS Monograph, Vol. 2, No. 2, 00102-2015, 01.04.2016.

Research output: Contribution to journalArticle

Bassi, I, Hollis, G, Cottin, V, Harari, S, Zwanenburg, E, Veltkamp, M, Casanova, A, Fletcher, M, Masefield, S, Powell, P & Boyd, J 2016, 'Understanding the priorities for women diagnosed with lymphangioleiomyomatosis: A patient perspective', ERS Monograph, vol. 2, no. 2, 00102-2015. https://doi.org/10.1183/23120541.00102-2015
Bassi, Iris ; Hollis, Gill ; Cottin, Vincent ; Harari, Sergio ; Zwanenburg, Elma ; Veltkamp, Marcel ; Casanova, Alvaro ; Fletcher, Monica ; Masefield, Sarah ; Powell, Pippa ; Boyd, Jeanette. / Understanding the priorities for women diagnosed with lymphangioleiomyomatosis : A patient perspective. In: ERS Monograph. 2016 ; Vol. 2, No. 2.
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