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[牙科与口腔医学中的罕见疾病:2017年首届全国大会报告]

[Rare diseases in dentistry and oral medicine : Report on the 2017 first national congress].

作者信息

Hanisch Marcel, Jung Susanne, Kleinheinz Johannes

机构信息

Klinik für Mund‑, Kiefer- und Gesichtschirurgie, Albert-Schweitzer-Campus 1, Gebäude W 30, Universitätsklinikum Münster, 48149, Münster, Deutschland.

出版信息

Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2018 Apr;61(4):442-445. doi: 10.1007/s00103-018-2708-0.

Abstract

On November 25, the first national congress for rare diseases in dentistry and oral medicine under the auspices of ACHSE e. V. and Orphanet was held in Muenster. With speakers from the field of medicine, dentistry, politics, patient advocacy groups, self-help groups and persons concerned, a platform for exchange between physicians and patients on an equal footing was offered to the participants. At the end of each of the 12 lectures, more than 300 national and international guests discussed the various issues and perspectives related to the topic of rare diseases in dentistry and oral medicine. Besides the different presentations focusing on dentistry, neuropediatrics, and human genetics, the existing centers for rare diseases, sources of information, European reference networks, and the national action plan for people with rare diseases were the subjects of intensive discussion. The patient perspective was also considered. From now on the congress shall be held in Muenster biennially.

摘要

11月25日,在ACHSE e.V.和罕见病组织(Orphanet)的支持下,首届全国牙科与口腔医学罕见病大会在明斯特举行。会议邀请了医学、牙科、政治、患者权益倡导组织、自助组织的代表以及相关人士发言,为医生和患者提供了一个平等交流的平台。在12场讲座结束时,300多位国内外嘉宾就牙科与口腔医学罕见病主题的各种问题和观点展开了讨论。除了聚焦牙科、神经儿科学和人类遗传学的不同演讲外,现有的罕见病中心、信息来源、欧洲参考网络以及国家罕见病患者行动计划也成为了深入讨论的话题。会议还考虑了患者的观点。今后,该大会将每两年在明斯特举办一次。

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