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Principles of Disease Surveillance01:26

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When a person's physical, emotional, intellectual, social development or spiritual functioning is compromised, this deviation from a healthy normal state is called illness. Illness creates stress that in turn harms individuals. Irritation, anger, denial, hopelessness, and fear are behavioral and emotional changes an individual experiences in the phases of illness. A variety of factors influence a person's health and well-being.
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Updated: Jul 15, 2025

Comprehensive & Cost Effective Laboratory Monitoring of HIV/AIDS: an African Role Model
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发展中国家的罕见病:来自中国协作网络的见解

Jishizhan Chen1, Yihan Li2, Jinke Chang1

  • 1UCL Centre for Biomaterials in Surgical Reconstruction and Regeneration, Division of Surgery & Interventional Science, University College London, London, UK.

The International journal of health planning and management
|September 30, 2023
PubMed
概括

发展中国家可以通过将政府主导的国家战略与地方倡议相结合来解决罕见疾病 (RDs). 这种方法,以中国为例,旨在改善罕见病患者的医疗保健.

关键词:
从底层向上进行干预.发展中国家 发展中国家 发展中国家医疗保健政策制定者卫生保健政策制定者罕见的疾病 罕见的疾病从上到下的策略.

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科学领域:

  • 公共卫生 公共卫生
  • 医疗保健政策 医疗保健政策
  • 罕见疾病 罕见疾病

背景情况:

  • 罕见疾病 (RDs) 给全球医疗保健带来了重大挑战.
  • 发展中国家往往缺乏建立的医疗保健政策模板,用于RDs.
  • 现有策略可能无法充分解决不同医疗保健系统中 RDs 的独特需求.

研究的目的:

  • 引入和讨论一个综合的自上而下的和自下而上的战略,以应对发展中国家的罕见疾病.
  • 提供中国对罕见病医疗保健政策的方法的案例研究.
  • 为其他寻求改善罕见病医疗保健的发展中国家提供见解.

主要方法:

  • 对中国罕见病管理的国家和地方政策的分析.
  • 审查政府,地方当局和非政府组织 (NGO) 的角色.
  • 讨论集中规划与本地实施的整合.

主要成果:

  • 中国采用双重战略:国家层面的政策制定和资源协调.
  • 当地当局和非政府组织在调整政策和填补服务缺口方面发挥着至关重要的作用.
  • 这种综合方法证明了发展中国家的可行模式.

结论:

  • 从上向下治理和自下而上的干预措施的结合在发展中国家的罕见疾病管理中是有效的.
  • 中国的模式为面临类似医疗保健挑战的其他国家提供了可转移的框架.
  • 通过协调的国家和地方的努力,可以实现改善罕见疾病的医疗保健.