|
.................................... Search the net .................................... |
Paediatric Pulmonology and Allergology
2006 April, Vol. IX, No. 1 (3211-3219)
RARE AND ORPHAN LUNG DISEASES
Jean-Francois Cordier
Professor of Respiratory Medicine – Claude Bernard University Head, Dept of Respiratory Medicine – Reference, Centre for Orphan Pulmonary Diseases Louis Pradel University Hospital, Lyon (Bron), France
Patients with rare lung diseases often feel isolated, especially if their physician has limited experience and knowledge of their disease. They can feel like an “orphan” in the field of healthcare. A respiratory professional who does not work in a large hospital in a big town may not feel concerned by rare and so-called orphan lung diseases, since it is often supposed that these diseases are reserved for university specialists. However, this should not be the case, as patients live in different locations throughout every country and have proximity healthcare needs. Therefore, every respiratory professional should meet several patients with a rare disease in the course of their career. This review examines how to deal with such patients and where information can be obtained in order to offer the best current care (Breathe 2005; 2 (2): 147–54 with permission).