Chair(s): Cormac McCarthy, Laura Fabbri, Marlies S. Wijsenbeek
Session type: Symposium
Bruno Guedes Baldi
Session content
Anna Svenningsson
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Global differences in LAM care: challenges and opportunities
Bruno Guedes Baldi
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Marta Garcia Moyano
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Nishant Gupta
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Session aims
to highlight the challenges in delivering care for patients with rare lung diseases worldwide, using lymphangioleiomyomatosis (LAM) as a paradigm of both the challenges and possible successes that can be achieved; to identify the challenges in standardising care for patients with LAM, contrasting the difficulties in Europe, the United States, South America and beyond; to describe how patient involvement and patient advisory groups can improve care and research of these diseases; to identify the benefit of European Reference Networks and how they operate to improve clinical care; to address how modern technologies, both clinical and translational, are being used to inform diagnostic ability and improve delivery of care and therapy; to discuss the use of artificial intelligence in imaging and pathology, together with the use of home monitoring and machine learning; to explain the role of patient involvement in driving improvements in care and knowledge of LAM, to explain the current state of the art in diagnostics of LAM and how new techniques and technologies have improved this, to differentiate between care of patients with LAM in different countries and how unified approaches can better help all stakeholders, and to discuss the utility of new methods to predict prognosis and determine the therapeutic benefit and response in LAM.