发展全球罕见病护理网络,以加强患者护理和支持
1Noah's Ark Children's Hospital for Wales, Cardiff and Vale University Health Board, Cardiff, Wales.
Nursing children and young people
|September 9, 2024
概括
罕见疾病影响着许多人,但护理意识很低. 全球罕见病护理网络 (GNNRD) 连接全球护士,以改善罕见和未诊断疾病 (RUD) 患者的护理和宣传.
科学领域:
- 罕见疾病流行病学和患者影响.
- 护理教育和专业发展.
- 全球卫生网络和患者倡导.
背景情况:
- 罕见疾病总体影响大约每17个人中就有1人.
- 关于罕见疾病的护理意识和教育存在重大差距.
- 患有罕见和未诊断疾病 (RUDs) 的患者和家人面临着许多挑战.
研究的目的:
- 为了解决缺乏关于罕见疾病的护理教育的问题.
- 引入全球护理网络罕见疾病 (GNNRD).
- 概述GNNRD在赋权护士和倡导患者方面的目标.
主要方法:
- 罕见和未诊断疾病 (RUDs) 的概述.
- 描述患者和家人面临的挑战.
- 关于GNNRD的建立和目标的解释.
主要成果:
- 建立了GNNRD,以连接世界各地的护士.
- 该网络旨在促进领导力,知识交流和技能发展.
- GNNRD提供了一个影响政策和患者倡导的平台.
结论:
- 全国罕见病发展计划 (GNNRD) 是提高罕见病护理护理能力的重要举措.
- 在全球范围内赋予护士权力,可以为RUDs患者带来更好的结果.
- 该网络在多个层面上为患者及其家人提供必要的倡导.
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