中国药房2018，Vol.29Issue(4)：433-436,4.DOI:10.6039/j.issn.1001-0408.2018.04.01
《英国罕见病策略》分析及对我国的启示
Analysis of UK Strategy for Rare Diseases and Its Enlightenment to China
摘要
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.关键词
英国罕见病策略/患者赋能/患者组织/罕见病Key words
UK Strategy for Rare Diseases/Patient empowerment/Patient organization/Rare disease分类
医药卫生引用本文复制引用
陈永法,石伟峰..《英国罕见病策略》分析及对我国的启示[J].中国药房,2018,29(4):433-436,4.基金项目
国家社会科学基金重大项目(No. 15ZDB167) （No. 15ZDB167）
江苏高校哲学社会科学研究一般项目(No. 苏教社政函〔2014〕8号-2014SJD084) （No. 苏教社政函〔2014〕8号-2014SJD084）
