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DOI: 10.1055/s-0032-1309876
Seltene Erkrankungen in der Pneumologie und damit verbundene Herausforderungen
Rare Diseases in Pulmonary Medicine and its ChallengesPublication History
eingereicht 16 March 2012
akzeptiert nach Revision 18 April 2012
Publication Date:
12 June 2012 (online)
Zusammenfassung
Die medizinische Unter- und Fehlversorgung von Patienten mit seltenen Erkrankungen ist von allen Akteuren im Gesundheitswesen erkannt. Es werden große Anstrengungen unternommen, um das Wissen über die Krankheiten und die Versorgung betroffener Patienten zu verbessern.
Politische Initiativen auf europäischer Ebene haben die Verbesserung von Versorgungsstrukturen für die Betreuung von Patienten mit seltenen Erkrankungen in den Mitgliedsländern zum Ziel.
Die geschaffenen Anreize für die Entwicklung von Medikamenten für seltene Erkrankungen haben zu vermehrten Studienaktivitäten und Zulassungen von Orphan Drugs geführt.
Patienten sind national wie auch international in verschiedenen Patientenorganisationen für ihre jeweilige Erkrankung sowie in Dachverbänden organisiert.
Viele Experten engagieren sich in nationalen und internationalen Netzwerken und Registern, die Forschungsdaten für seltene Erkrankungen in hoher Qualität generieren und publizieren.
Die Suche nach spezialisierten Partnern für Fragen zu einer bestimmten seltenen Lungenerkrankung wird durch die vorhandene Infrastruktur erleichtert.
Abstract
The 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.
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