Other rare lung diseases

Educational aspects of rare and orphan lung diseases

Respiratory Research ◽

10.1186/s12931-021-01676-1 ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Tiago M. Alfaro ◽

Marlies S. Wijsenbeek ◽

Pippa Powell ◽

Daiana Stolz ◽

John R. Hurst ◽

...

Keyword(s):

Lung Diseases ◽

Healthcare Professionals ◽

Treatment Options ◽

Delayed Diagnosis ◽

Reference Network ◽

Delay In Diagnosis ◽

Positive Effects ◽

European Reference Network ◽

Patient Representatives ◽

Rare Lung Diseases

AbstractPeople with rare lung diseases often suffer the burden of delayed diagnosis, limited treatment options, and difficulties in finding expert physicians. One of the reasons for the delay in diagnosis is the limited training for healthcare practitioners on rare diseases. This review explores the main concerns and needs for education on rare lung diseases from the perspectives of both patients and professionals. Despite the increasing interest in rare lung disorders and some recent breakthrough developments on the management of several diseases, healthcare professionals, including general practitioners and hospital workers, receive little education on this topic. Nonetheless, many healthcare professionals show much interest in receiving further training, especially on diagnosis. Patients and families want easier access to high-quality education materials to help them manage their own disease. Well-educated patients are better equipped to deal with chronic diseases, but patient education can be challenging as patients’ individual health issues, and diverse backgrounds can create significant barriers. Raising more awareness for rare lung diseases and further development of patient-centred international expert networks like the European Reference Network on Rare Lung Diseases (ERN-LUNG), which includes both experts and patient representatives, are essential for improving care and education on rare lung diseases. Initiatives such as the Rare Disease Day, have been successful in increasing awareness for rare conditions. The development of online tools for accessing information has had positive effects and should be further supported and extended in the future.

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Vasculitis and Rare Lung Diseases

Foundations of Respiratory Medicine ◽

10.1007/978-3-319-94127-1_17 ◽

2018 ◽

pp. 275-297

Author(s):

Pasupathy Sivasothy ◽

Muhunthan Thillai

Keyword(s):

Lung Diseases ◽

Rare Lung Diseases

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Rare Lung Diseases: Occasionally the “Horse” Has Stripes

Clinics in Chest Medicine ◽

10.1016/j.ccm.2016.07.001 ◽

2016 ◽

Vol 37 (3) ◽

pp. xv-xvi

Author(s):

Robert M. Kotloff ◽

Francis X. McCormack

Keyword(s):

Lung Diseases ◽

Rare Lung Diseases

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Rare Lung Diseases III: Pulmonary Langerhans’ Cell Histiocytosis

Canadian Respiratory Journal ◽

10.1155/2010/216240 ◽

2010 ◽

Vol 17 (3) ◽

pp. e55-e62 ◽

Cited By ~ 21

Author(s):

Stephen C Juvet ◽

David Hwang ◽

Gregory P Downey

Keyword(s):

Cell Biology ◽

Langerhans Cell Histiocytosis ◽

Lung Diseases ◽

Treatment Options ◽

Langerhans Cell ◽

Major Theme ◽

Pulmonary Langerhans Cell Histiocytosis ◽

Current Series ◽

Pulmonary Manifestations ◽

Rare Lung Diseases

Pulmonary Langerhans’ cell histiocytosis (PLCH) is an unusual cystic lung disease that is also characterized by extrapulmonary manifestations. The current review discusses the presenting features and relevant diagnostic testing and treatment options for PLCH in the context of a clinical case. While the focus of the present article is adult PLCH and its pulmonary manifestations, it is important for clinicians to distinguish the adult and pediatric forms of the disease, as well as to be alert for possible extrapulmonary complications. A major theme of the current series of articles on rare lung diseases has been the translation of insights gained from fundamental research to the clinic. Accordingly, the understanding of dendritic cell biology in this disease has led to important advances in the care of patients with PLCH.

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