| 引用本文：马正, 高嘉敏, 赵艺皓, 戴婉薇, 郑晓瑛.罕见病政策国际经验及对我国的启示[J].中国卫生政策研究,2018,11(11):61-67 |
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| 罕见病政策国际经验及对我国的启示 |
| 投稿时间：2018-07-23 修订日期：2018-10-01 PDF全文浏览 HTML全文浏览 |
| 马正1, 高嘉敏2, 赵艺皓1, 戴婉薇1, 郑晓瑛1 |
1. 北京大学人口研究所 北京 100871;
2. 北京大学战略研究所 北京 100871;
3. 北京大学亚太经合组织健康科学研究院 北京 100871 |
| 摘要:本研究系统梳理了近年来有关罕见病政策和服务的文献及文件，归纳了美国、日本、欧盟等国家和地区罕见病方面的立法及相关法规、管理制度、激励措施、保障政策等方面的政策设计和实践经验。目前，发达国家和地区对罕见病制定了较为系统的政策和法规，罕见病药品的研发和医疗保障等在法律层面得到了不同程度的保障。我国尚未形成针对罕见病的系统性的政策体系，结合中国实际，我国应从逐步建立系统的罕见病政策法规、拓宽筹资渠道、鼓励孤儿药研发，扩大新生儿筛查疾病的范围等方面着手，推动我国罕见病政策发展。 |
| 关键词:罕见病 国际政策 孤儿药 |
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| Policy of rare diseases: International experience and its implication for China |
| MA Zheng1, GAO Jia-min2, ZHAO Yi-hao1, DAI Wan-wei1, ZHENG Xiao-ying1 |
1. Institute of Population Research, Peking University, Beijing 100871, China;
2. Institute of Strategic Research, Peking University, Beijing 100871, China;
3. PKU-APEC Health Science Academy, Beijing 100871, China |
| Abstract:This study systematically reviews the latest and relevant literatures and policy documents on the rare diseases in some developed countries or areas in recent years.Particularly it summarizes the practice and mode of rare diseases policy in United States, Japan and European Union where in legislation, administration system, incentive measures and security policy are well practiced.Developed countries and regions have more systematic policy on rare diseases.Combined with the practical situation of China, it is proposed that China should improve rare diseases policies and regulations stage by stage, expand sources of financing, encourage R&D on orphan drugs as well as screening for diseases in newborns. |
| Key words:Rare diseases International policies Orphan drug |
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