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慢性鼻-鼻窦炎患者顾问委员会 - 一个 EUFOREA 的倡议。

Patient Advisory Board for Chronic Rhinosinusitis - A EUFOREA initiative.

机构信息

European Forum for Research and Education in Allergy and Airway diseases (EUFOREA), Brussels, Belgium; Allergy and Clinical Immunology Research Group, Department of Microbiology, Immunology and Transplantation, KU Leuven, Leuven, Belgium.

European Forum for Research and Education in Allergy and Airway diseases (EUFOREA), Brussels, Belgium.

出版信息

Rhinology. 2019 Oct 1;57(5):331-335. doi: 10.4193/Rhin19.012.

Abstract

Despite the high prevalence of chronic rhinosinusitis (CRS) and its impact on patients' quality of life, no European patient organization that advocates for patients with CRS currently exists. To fill this gap and give a voice to CRS patients, EUFOREA has created a patient advisory board, whose goal is to better understand the real-life needs of patients, to raise awareness at political level and to involve patients in the development of novel integrated solutions to accelerate access to accurate diagnosis and treatments. This report summarizes the key discussion points from the kick-off meeting of the board on the 8th June 2018 and provides an outline of the key objectives for the future.

摘要

尽管慢性鼻-鼻窦炎(CRS)的患病率很高,且对患者的生活质量有影响,但目前在欧洲还没有专门倡导 CRS 患者权益的患者组织。为填补这一空白,让 CRS 患者有表达意见的渠道,EUFOREA 成立了一个患者顾问委员会,该委员会的目标是更好地了解患者的实际需求,在政治层面提高认识,并让患者参与到新型综合解决方案的制定中,以加速获得准确诊断和治疗的机会。本报告总结了该委员会于 2018 年 6 月 8 日举行的启动会议的主要讨论要点,并概述了未来的主要目标。

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