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Orphan Lung Diseases: From Definition to Organization of Care

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Orphan Lung Diseases

Abstract

The term “orphan” has been coined to describe rare diseases because of the affected sense by patients that many physicians are uncomfortable with the management of their disease, and, as such, hope for the future is dim because so little research has been devoted to understanding such rare disorders in patients and improving their quality of life [1]. Their feeling of abandonment is intensified by comparisons with patients who suffer from common diseases and who benefit from extensive research and continuous drug development. The struggle for equal access to care and research by patients and the organizations that represent them is common to all orphan lung diseases. The associated ethical and social issues are complex and drive many of the particularities of how the care for these conditions is organized. In fact, in some countries, patients have a legal right to equal access to health care, regardless of the epidemiology of their condition [2].

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Authors and Affiliations

  1. Department of Respiratory Medicine, National Coordinating Reference Centre for Rare Pulmonary Diseases (OrphaLung), Louis Pradel Hospital, University of Lyon, Lyon, France

    Vincent Cottin

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  1. Vincent Cottin
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Correspondence to Vincent Cottin .

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Editors and Affiliations

  1. Department of Respiratory Medicine, National Coordinating Reference Centre for Rare Pulmonary Diseases (OrphaLung), Louis Pradel Hospital, University of Lyon, Lyon, France

    Vincent Cottin

  2. Fondazione Policlinico A. Gemelli IRCCS, Università Cattolica del Sacro Cuore, Roma, Italy

    Luca Richeldi

  3. National Jewish Health, Denver, CO, USA

    Kevin Brown

  4. Division of Pulmonary, Critical Care, and Sleep Medicine Department of Internal Medicine, University of Cincinnati, Cincinnati, OH, USA

    Francis X. McCormack

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Cottin, V. (2023). Orphan Lung Diseases: From Definition to Organization of Care. In: Cottin, V., Richeldi, L., Brown, K., McCormack, F.X. (eds) Orphan Lung Diseases. Springer, Cham. https://doi.org/10.1007/978-3-031-12950-6_1

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  • DOI: https://doi.org/10.1007/978-3-031-12950-6_1

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