| 引用本文：何江江,张崖冰,夏苏建,等.欧盟罕见病保障体系及启示[J].中国卫生政策研究,2012,5(7):52-59 |
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| 欧盟罕见病保障体系及启示 |
| 投稿时间：2012-04-11 修订日期：2012-06-16 PDF全文浏览 HTML全文浏览 |
| 何江江1, 张崖冰1, 夏苏建2, 胡善联3 |
| 1.上海市卫生发展研究中心;2.暨南大学医学院;3.上海市卫生发展研究中心,复旦大学公共卫生学院 |
| 摘要:欧盟在2008年正式从全欧洲的战略层面开展罕见病保障专项工作，已经形成的罕见病相关工作经验，非常值得中国借鉴。通过总结欧盟罕见病概况及孤儿药目录、罕见病组织结构与战略计划、罕见病筹资支付体系和服务提供等情况，分析欧盟罕见病保障体系的优缺点，提出我国开展罕见病保障工作的实施建议，如统一罕见病的合理定义、编码与目录；建立罕见病保障工作的组织架构，制定罕见病国家（地区）计划或政策，优化罕见病服务提供，建立可持续性的罕见病筹资体系，注重罕见病工作的综合全面性和地区差异性，为提高我国罕见病防治工作的保障力度和可持续性提供参考。 |
| 关键词:欧盟 罕见病 孤儿药 社会保障 医疗保险 |
| 基金项目:上海市卫生经济学会委托课题 |
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| Social security system of rare diseases in European Union and its implications for China |
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| Abstract:Eoupean Union carried out social security work of rare diseases at the strategic level from all over Europe in 2008, and had gained some good work experiences related rare diseases, from which China can learn. By summing up the overview of the EU rare diseases and its orphan drugs list, organization structure and strategic plan, financing and payment systems, and services providing system, etc. we analyzed the advantages and disadvantages of the security system of EU’s rare disease , and proposed the implementation recommendations to carrying out social protection of rare disease in China, which including unifying rare diseases definition, coding, and catalogue; constructing the organization system for health care; drawing up national and regional plans and policies; optimizing services for rare diseases; constructing sustainable financing system for rare diseases; focusing on the comprehensiveness and regional disparity，and provided a reference to improving prevention and control of rare disease, and strengthed the sustainability development of China’s rare diseases security system. |
| Key words:European Union Rare diseases Orphan drugs Social security Medical insurance |
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