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《英国罕见病策略》分析及对我国的启示
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| 篇名： | 《英国罕见病策略》分析及对我国的启示 |
| TITLE： | |
| 摘要： | 目的：借鉴《英国罕见病策略》实施经验，为我国罕见病医疗保障政策的制定提供参考。方法：介绍《英国罕见病策略》的出台背景、实施现状及内容主旨，分析并总结其实施经验，并为我国相应机制的建立提供借鉴。结果与结论：英国通过加强信息收集、提升服务质量及联合患者组织等行为强化患者赋能，同时推广先进的疾病筛查及基因检测技术，开展罕见病诊疗培训，积极吸纳患者参与研究等，形成了完善的罕见病医疗保障体系。我国应当借鉴英国经验，同时立足本国罕见病现状，建立全面的罕见病医疗保障框架、扶持患者组织发展、完善罕见病服务体系并加强罕见病研究，以期为我国罕见病患者提供更好的健康保障。 |
| ABSTRACT： | OBJECTIVE： To learn from the implementation experience of UK Strategy for Rare Diseases， and to provide reference for the formulation of the rare disease guarantee strategy in China. METHODS： The background， status quo and content of UK Strategy for Rare Diseases were introduced； its implementation experience was analyzed and summarized to provide enlightenment to the construction of relevant mechanism in China. RESULTS & CONCLUSIONS： British government took measure like strengthening the collection of message， improving service quality and uniting patient organization for patient empowerment， while spreading advanced disease screening and gene detection technology， developping training in diagnosis and treatment of rare disease and encouraging patients to participate in the research. The comprehensive and perfect guarantee system of rare disease had been formed. British experience is worth learning. Our country should construct comprehensive guarantee framework of rare disease， support patient organizations， improve service system for patient and strengthen rare disease research to provide health guarantee for rare disease patients. |
| 期刊： | 2018年第29卷第4期 |
| 作者： | 陈永法，石伟峰 |
| AUTHORS： | CHEN Yongfa，SHI Weifeng |
| 关键字： | 英国罕见病策略；患者赋能；患者组织；罕见病 |
| KEYWORDS： | UK Strategy for Rare Diseases； Patient empowerment； Patient organization； Rare disease |
| 阅读数： | 520 次 |
| 本月下载数： | 24 次 |
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