Introduction of the prevention and guarantee system of rare diseases in South Korea and its enlightenment to China

YANG Yifan; XIE Jinping; SHAO Rong

doi:10.6039/j.issn.1001-0408.2022.22.01

您当前的位置：

首页 >

文章列表页 >

Introduction of the prevention and guarantee system of rare diseases in South Korea and its enlightenment to China

更新时间：2023-02-22

- Introduction of the prevention and guarantee system of rare diseases in South Korea and its enlightenment to China
- ZHONGGUO YAOFANG Vol. 33, Issue 22, Pages: 2689-2693(2022)
- 作者机构：
  
  中国药科大学国家药物政策与医药产业经济研究中心，南京　211198
- 作者简介：
- 基金信息：
- DOI：10.6039/j.issn.1001-0408.2022.22.01
  CLC： R95
- Published：30 November 2022，
  
  Received：16 May 2022，
  
  Revised：05 September 2022，
扫描看全文
杨伊凡,谢金平,邵蓉.韩国罕见疾病的防治与保障体系介绍及其对我国的启示 ^Δ[J].中国药房,2022,33(22):2689-2693.

YANG Yifan,XIE Jinping,SHAO Rong.Introduction of the prevention and guarantee system of rare diseases in South Korea and its enlightenment to China[J].ZHONGGUO YAOFANG,2022,33(22):2689-2693.
杨伊凡,谢金平,邵蓉.韩国罕见疾病的防治与保障体系介绍及其对我国的启示 ^Δ[J].中国药房,2022,33(22):2689-2693. DOI： 10.6039/j.issn.1001-0408.2022.22.01.

YANG Yifan,XIE Jinping,SHAO Rong.Introduction of the prevention and guarantee system of rare diseases in South Korea and its enlightenment to China[J].ZHONGGUO YAOFANG,2022,33(22):2689-2693. DOI： 10.6039/j.issn.1001-0408.2022.22.01.

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.

关键词

罕见疾病韩国防治保障孤儿药中国

Keywords

South Koreaprevention and treatmentguaranteeorphan drugChina

references

陈立铭，贾蒙，何正阳，等. 罕见病群体现状研究及对策分析[J]. 医学与哲学（B），2016，37（11）：3-6.

吕有标，黄春芝，张保寅，等. 中国罕见病研究现状及对策建议[J]. 中国药物经济学，2021，16（2）：9-13.

顾一纯，张琴华，黄镇，等. 韩国高值罕用药使用保障机制[J]. 中国卫生资源，2021，24（6）：641-645，825.

褚淑贞，李伟霞. 亚洲部分国家和地区针对罕用药开发的激励措施以及对我国的启示[J]. 中国药科大学学报，2014，45（1）：125-128.

MOHW.Second comprehensive plan for the management of rare diseases：2022-2026[EB/OL].（2022-02-28）[2022- 03-22]. http：//www.mohw.go.kr/react/al/sal0301vw.jsp?PAR_MENU_ID=04&MENU_ID=0403&page=1&CONT_SEQ=370404http://www.mohw.go.kr/react/al/sal0301vw.jsp?PAR_MENU_ID=04&MENU_ID=0403&page=1&CONT_SEQ=370404.

Office of Disease Management.Rare disease information[EB/OL].[2022-03-23]. https：//helpline.kdca.go.kr/cdchelp/ph/rdiz/selectRdizInfList.do?menu=A0100https://helpline.kdca.go.kr/cdchelp/ph/rdiz/selectRdizInfList.do?menu=A0100.

王远玭，胡晓敏，弓孟春，等. 罕见病诊断的相关技术及发展[J]. 科技导报，2017，35（16）：26-30.

KIM S Y，LIM B C，LEE J S，et al. The Korean undiag-nosed diseases program：lessons from a one-year pilot project[J]. Orphanet J Rare Dis，2019，14（1）：68.

NHIS.Severe disease calculation special case[EB/OL].[2022-03-21]. https：//www.nhis.or.kr/nhis/togetherhttps://www.nhis.or.kr/nhis/together.

KDCA.Medical expenses assistance project[EB/OL].[2022-03-21]. https：//helpline.kdca.go.kr/cdchelp/ph/ptlcontents/selectPtlConSent.do?schSno=112&menu=B0101https://helpline.kdca.go.kr/cdchelp/ph/ptlcontents/selectPtlConSent.do?schSno=112&menu=B0101.

高春兰. 韩国社会福利法人组织的运作模式研究[J]. 社会工作，2012（3）：12-15.

朱以诚，张抒扬. 我国罕见病诊疗和研究平台建立现状和回顾[J]. 罕见病研究，2022，1（2）：93-96.

黄如方.中国罕见病药物可及性报告：2019[R/OL].[2022-02-21]. http：//www.cord.org.cn/news/528.htmlhttp://www.cord.org.cn/news/528.html.

何山，高仕奇，何欣悦，等. 中国罕见病领域新进展：2020－2021[J]. 协和医学杂志，2022，13（1）：39-45.

Views

下载量

CSCD

Alert me when the article has been cited

提交

Tools

Publicity Resources

我国化妆品安全监测体系的现状及相关对策Δ

对我国药品上市后再评价工作的文献分析

中美两国GMP认证体制比较研究

中美两国药品安全监管体制的比较研究

中国人群药物致急性肾损伤的系统评价

Related Author

姚金成曾令贵林新文胡　领杜　娟黎银波饶　健

班雅倩常新义袁晓龙孙建勋

李成平张　媚孙国君单伟光

韩胜昔叶露

潘坤明

陈灿

江莹

吴薇

Related Institution

No data

Address：8/F,129 Daping Main Street,Yuzhong District,Chongqing 400042,P.R.China
Technical support is provided by Beijing Founder Electronics co., LTD 渝ICP备15012710号公网安备50010302001817
It is recommended to read the content of this site in Chrome&IE9+. Please switch to extreme mode in browser 360.
Cookies We use cookies to help provide and enhance our service and tailor content. By continuing, you agree to the use of cookies.

⁰