Patients suffering from rare and orphan lung diseases often feel frustrated and angry because of a delayed diagnosis and the insufficient experience of their nearest physician.
As many diseases can be classed as rare or orphan, pulmonologists need to cooperate through networks and form connections with specialised reference centres to ensure optimal diagnosis and care.
Participation in registries and clinical studies helps to increase the collective and individual knowledge of respiratory specialists.
Providing information to patients both directly and through patients' associations is a necessity, as orphan diseases are not a regular subject covered in medical reports in the lay press.
Action is being taken by the ERS to include rare and orphan lung diseases in scientific and educational programmes and to develop task forces for specific diseases.
To motivate the interest of chest physicians in rare orphan lung diseases.
To define rare and/or orphan lung diseases.
To provide information on orphan drugs.
To give examples of orphan lung diseases.
To provide details about patient associations, networks and reference centres.
Summary 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.
- ©ERS 2005
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