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韩国罕见疾病的防治与保障体系介绍及其对我国的启示
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| 篇名： | 韩国罕见疾病的防治与保障体系介绍及其对我国的启示 |
| TITLE： | CHINA PHARMACY Volume 33，Number 22， November 30，2022 Semimonthly Table of Contents Introduction of the prevention and guarantee system of rare diseases in South Korea and its enlightenment to China |
| 摘要： | 目的为完善我国罕见疾病管理提供参考。方法通过查阅韩国罕见疾病管理综合规划及相关法规，总结韩国针对罕见疾病典型的防治做法和保障措施，并结合我国的实际情况为我国罕见疾病管理提出完善建议。结果与结论韩国通过动态增补的罕见疾病目录、差异化的罕见疾病费用援助计划以及提供补充社会保障的患者组织构建了较为完整的罕见疾病防治与保障体系。我国可以从建立罕见疾病管理的纲领性行动计划、完善罕见疾病目录遴选程序、探索建立罕见疾病补助策略和支持发展罕见疾病患者组织4个方面，优化罕见疾病的管理工作。 |
| ABSTRACT： | OBJECTIVE To provide reference for improving the management of rare diseases in China. METHODS Through consulting the comprehensive plan for rare disease management in South Korea and relevant laws and regulations， typical prevention and treatment practices and guarantee measures for rare diseases in South Korea were summarized， and suggestions on improving the management of rare diseases in China were put forward based on the actual situation in China. RESULTS & CONCLUSIONS South Korea has established a relatively complete prevention and guarantee system of rare diseases through dynamic supplementary rare disease list， differentiated rare disease cost assistance programs， and patient organizations providing supplementary social security. Our country can optimize the management of rare diseases from 4 aspects： establishing a programmatic action plan for rare disease management， improving the selection procedure of rare disease catalogue， exploring the establishment of rare disease subsidy strategies and supporting the development of rare disease patient organization. |
| 期刊： | 2022年第33卷第22期 |
| 作者： | 杨伊凡，谢金平，邵蓉 |
| AUTHORS： | YANG Yifan，XIE Jinping，SHAO Rong |
| 关键字： | 罕见疾病；韩国；防治；保障；孤儿药；中国 |
| KEYWORDS： | rare diseases； South Korea； prevention and treatment； guarantee； orphan drug； China |
| 阅读数： | 175 次 |
| 本月下载数： | 11 次 |
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