Research on the Rare Disease Protection Mechanism in the US.and Its Enlightenment for China
- VernacularTitle:美国罕见病保障机制及其对我国的启示
- Author:
Kaiyuan LI
1
;
Feifei CHEN
1
;
Senwei ZHANG
1
;
Luying ZHANG
1
Author Information
1. 复旦大学公共卫生学院 上海 200032
- Publication Type:Journal Article
- Keywords:
rare disease;
protection mechanism;
US.
- From:
Chinese Health Economics
2025;44(1):89-92
- CountryChina
- Language:Chinese
-
Abstract:
The US.is the first country to establish a systematic and comprehensive rare disease protection mechanism to provide protection for patients with rare diseases.Based on the perspective of the whole process,it systematically comprehends the rare disease protection mechanism and its operation from five aspects:rare disease legislation,therapy R&D and marketing support,screening and treatment,medical insurance reimbursement,patient registration and information sharing,so as to provide useful references for China to improve the protection mechanism for rare diseases.
