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The "China model" for rare disease governance: Policy framework, local implementation, and pathways for optimization.
Xiumei Zhang1, Jing Luan2, Yan Mu1
1School of Healthcare Security, Shandong First Medical University & Shandong Academy of Medical Science, Ji'nan, Shandong, China.
Intractable & Rare Diseases Research
|June 1, 2026
Summary
China
Area of Science:
- Public Health
- Health Policy
- Rare Diseases
Background:
- Global challenges in rare disease diagnosis and treatment persist.
- China developed a unique "China Model" for rare disease governance.
- This model emphasizes national policy and coordinated local action.
Purpose of the Study:
- To systematically review China's rare disease policies from 2009-2026.
- To analyze key domains: prevention, list-based governance, diagnosis, treatment, drug access, and payment.
- To examine Shandong Province as a case study.
Main Methods:
- Systematic review of national and provincial rare disease policies.
- Analysis of five core governance domains.
- Case study of Shandong Province's implementation.
Main Results:
- Unified standards via two national rare disease lists (207 conditions).
- 126 treatments included in national medical insurance.
- Shandong Province integrated systems and developed multilevel payment mechanisms.
Conclusions:
- China's "China Model" enhances clinical capacity via standardized systems and networks.
- Multilevel risk-sharing mechanisms are central.
- Persistent challenges include policy coordination, drug access, and data infrastructure.
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