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CC BY-NC-ND 4.0 · Laryngorhinootologie 2021; 100(S 01): S1-S11
DOI: 10.1055/a-1397-0842
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Rare Diseases and Otorhinolaryngology, Head and Neck Surgery

Article in several languages: deutsch | English
Stefan K. Plontke
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Abstract

Rare diseases pose multiple challenges for patients, relatives, physicians, nursing staff, and therapists. Their rarity impedes research and treatments due to medical and economical reasons. Many diseases in the field otorhinolaryngology, head and neck surgery are rare diseases due to their low prevalence. The initiation of the right management processes requires knowledge about diagnostics, resources like centers, networks and registries, about specifics of the physician-patient relationship, follow-up care including communication with family doctors and the role of self-help groups. Of special interest for university hospitals and our scientific society are the specific aspects of research including European networks and research funding, information management, public relations, education, training, financing, and regulations like orphan drugs and clinical trials in small populations.

Key words

rare diseases - otorhinolaryngology - medical ethics - orphan drugs


Publication History

Article published online:
30 April 2021

© 2021. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial-License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/).

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