建立罕见病全球护理网络,加强对患者的护理和支持。

Zoe Morrison, Kaila Stevens
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引用次数: 0

摘要

罕见病虽然单个罕见,但从整体上看却很常见,大约每 17 人中就有一人终生受其影响。然而,护理行业缺乏对罕见病的认识和教育。为了解决这个问题,全球罕见疾病护理网络 (GNNRD) 已经启动,目的是将来自各个实践领域和各个经验水平的护士联系起来,以改善罕见和未确诊疾病 (RUD) 患者的生活。GNNRD 旨在通过领导力、知识交流和技能发展增强全球护士的能力,并提供一个平台,使他们能够在地区、国家和国际层面上影响政策并为患者及其家庭代言。本文概述了 RUDs 以及患者及其家属所经历的一些挑战,并介绍了 GNNRD 的发展和目标。
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Developing a global nursing network for rare diseases to enhance patient care and support.

Rare diseases, while individually rare, are common when considered collectively, affecting about one in 17 people across their lifetime. However, there is a lack of awareness of and education about rare diseases in nursing. To address this, the Global Nursing Network Rare Diseases (GNNRD) has been launched to connect nurses from within all fields of practice and at all levels of experience, with the aim of improving the lives of people with rare and undiagnosed diseases (RUDs). The GNNRD aims to empower nurses on a global scale through leadership, knowledge exchange and skill development and to provide a platform from which they can influence policy and advocate for patients and their families at regional, national and international levels. This article provides an overview of RUDs and some of the challenges experienced by patients and their families and describes the development and aims of the GNNRD.

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来源期刊
Nursing children and young people
Nursing children and young people Medicine-Medicine (all)
CiteScore
1.20
自引率
0.00%
发文量
59
期刊最新文献
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