Dong Tian-Tian, Xie Dong-Yi
School of International Pharmaceutical Business, China Pharmaceutical University, Nanjing, China.
Front Public Health. 2025 Apr 2;13:1484286. doi: 10.3389/fpubh.2025.1484286. eCollection 2025.
The participation of patient organizations in the construction of medical security systems for rare diseases is an important proposition in the theory of welfare pluralism, which indicates that individualized services and diversified connections of patient organizations can fully meet the multiple medical insurance needs of patients with rare diseases. In actual practice, however, patient organizations continue to experience institutional and structural difficulties, such as improper supervision, insufficient capacity and insufficient coordination. The theory of welfare pluralism and the developmental experience of foreign rare disease organizations have suggested that patient organizations should clarify the bridge positioning and specialized development path in the multi-subject cooperation of organizations providing medical security for rare diseases, thereby improving the efficient implementation of medical security policies for rare diseases.
患者组织参与罕见病医疗保障体系建设是福利多元主义理论中的一个重要命题，这表明患者组织的个性化服务和多元化联系能够充分满足罕见病患者的多重医保需求。然而在实际实践中，患者组织仍面临着监管不当、能力不足和协调不够等制度性和结构性困境。福利多元主义理论以及国外罕见病组织的发展经验表明，患者组织应在为罕见病提供医疗保障的多主体合作中明确桥梁定位和专业化发展路径，从而提高罕见病医疗保障政策的有效实施。
