罕见病研究2024,Vol.3Issue(3) :405-410.DOI:10.12376/j.issn.2097-0501.2024.03.021

中国罕见病法律制度现状与对策

Present Situation and Countermeasures of China's Legal Responses to Rare Diseases

谢诗瑶 刘子钰 李顺平
罕见病研究2024,Vol.3Issue(3) :405-410.DOI:10.12376/j.issn.2097-0501.2024.03.021

中国罕见病法律制度现状与对策

Present Situation and Countermeasures of China's Legal Responses to Rare Diseases

谢诗瑶 1刘子钰 1李顺平1
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作者信息

  • 1. 山东大学齐鲁医学院公共卫生学院卫生管理与政策研究中心国家卫生健康委员会卫生经济与政策研究重点实验室山东大学健康偏好研究中心,济南 250012
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摘要

罕见病防治是中国重要的公共卫生问题.由于其呈现种类多、患者多、病情复杂和负担重等特点,无论从公民个人健康还是国家宏观责任层面,罕见病防治衍生的系列问题均亟待解决.立法是促进罕见病多病种防治和患者多层次保障的有效途径.本文基于对中国国家和地方层面罕见病相关法律制度的梳理和分析,从立法的整体性、规范性和可行性3个维度,提出完善和优化罕见病防治法律制度体系的对策建议,以期增强中国罕见病防治能力和患者保障水平.

Abstract

The prevention and treatment of rare diseases is an important public health issue in China.Rare diseases are characterized by diverse types,complex conditions,and heavy burdened to patients,leading to a series of issues in the urgent demand in prevention and treatment of rare diseases in terms of individuals'health and the national responsibilities.Related legislation is an effective way to promote multi-disease preven-tion and treatment of rare diseases,and patients'protection in multi-level.We tease out and analyze the legal system on national and local level related to rare diseases,and recommend the coping strategies and give sug-gestions to improve and optimize the legal system for the prevention and treatment of rare diseases from the three dimensions of completeness,normalization and feasibility of the legislation,hoping to improve the competence of China's rare disease prevention and treatment and raise the level of protection for the patients.

关键词

罕见病/法律制度/对策建议

Key words

rare diseases/legal system/countermeasures and recommendations

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基金项目

国家自然科学基金(72174110)

出版年

2024
罕见病研究

罕见病研究

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