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内镜-欧洲研究网络(Endo-ERN)简介及其使命。

Introduction to Endo-ERN-scope and mission.

机构信息

Department of Medicine, Division of Endocrinology and Centre for Endocrine Tumors Leiden (CETL), Leiden University Medical Centre, Leiden, the Netherlands.

Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany.

出版信息

Endocrine. 2021 Mar;71(3):537-538. doi: 10.1007/s12020-020-02602-z. Epub 2021 Jan 15.

Abstract

The official installation of the European Reference Networks in 2017 formed the foundation to improve quality and safety and access to highly specialized health care across the EU for patients affected by rare or low prevalence and complex conditions. The European Reference Network on Rare Endocrine Conditions (Endo-ERN) covers specific expertise from birth to senescence with a specific governance structure characterized by both a pediatric and an adult chair, and equal responsibilities for patient representatives and health care providers. The introduction on the scope and mission of Endo describes the complexity of the Endo-ERN mission and will thrive toward the ultimate aim and mission of the network of reducing health care inequalities across Europe. Specific knowledge and medical expertise of the existing rare endocrine condition is urgently needed, and therefore, raising awareness for Rare Disease Day from the Endo-ERN perspective is imperative.

摘要

2017 年,欧洲参考网络的正式建立为改善欧盟患者罕见或低流行率和复杂疾病的医疗质量、安全性和可及性奠定了基础。欧洲罕见内分泌疾病参考网络(Endo-ERN)涵盖了从出生到老年的特定专业知识,其治理结构的特点是同时设立儿科和成人主席,患者代表和医疗保健提供者承担同等责任。Endo 对网络的范围和使命的介绍描述了 Endo-ERN 使命的复杂性,并将朝着网络的最终目标和使命努力,即减少欧洲医疗保健不平等。目前迫切需要了解现有罕见内分泌疾病的具体知识和医学专业知识,因此,从 Endo-ERN 的角度提高对罕见病日的认识是至关重要的。

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