• M Wencker, H Teschler, C Vogelmeier, and R Koczulla.
• Ruhrlandklinik, Westdeutsches Lungenzentrum, Abteilung Pneumologie, Universitätsklinikum Essen. mwencker@arcor.de
• Pneumologie. 2012 Jul 1; 66 (7): 437-41.

AbstractThe importance of rare disease is appreciated by all parties and tremendous effort is made to increase the knowledge about the individual disorders and improve the care of affected patients. Political initiatives on a European level aim to improve the structure of medical care for patients with rare diseases in each member state. The provided incentives for the development of medicines for orphan diseases have led to increased research activities and numbers of licensed Orphan Drugs. Patients are organized nationally and internationally in various patient organizations and umbrella organizations. They are involved in health care policy, support the detection and research of rare diseases and offer support to affected patients and families with educational meetings and materials as well as options for discussions. Many experts are engaged in national and international networks and registries that generate and publish high quality research data on rare diseases. A well developed infrastructure is in place to support the search for qualified partners that can be of assistance with specific questions in a rare lung disease.© Georg Thieme Verlag KG Stuttgart · New York.

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