Phased Exploration and Reflections on the High-Quality Development of Rare Disease Centers: Based on the Practice of a Regional Women and Children's Medical Center

Shu LI; Li LIU; Wenhao ZHOU

Return

Phased Exploration and Reflections on the High-Quality Development of Rare Disease Centers: Based on the Practice of a Regional Women and Children's Medical Center

VernacularTitle:罕见病中心高质量发展的阶段性探索与思考——基于区域妇儿医学中心的实践
Author: Shu LI ¹ ; Li LIU ² ; Wenhao ZHOU ²
Author Information

1. Rare Disease Medical Center, Guangzhou Women and Children's Medical Center, Guangzhou Medical University, Guangzhou 510623, China;.
2. Rare Disease Medical Center, Guangzhou Women and Children's Medical Center, Guangzhou Medical University, Guangzhou 510623, China;Guangdong Provincial Key Laboratory of Pediatric Rare Diseases, Guangzhou Women and Children's Medical Center, Guangzhou Medical University, Guangzhou 510623, China;Guangdong Provincial Rare Disease Quality Control Center, Guangzhou Women and Children's Medical Center, Guangzhou Medical University, Guangzhou 510623, China;Guangzhou Municipal Key Laboratory of Pediatric Rare Diseases, Guangzhou Women and Children's Medical Center, Guangzhou Medical University, Guangzhou 510623, China;.
Publication Type:Journal Article
Keywords: rare disease center; regional maternal and child medical center; discipline construction; high-quality development; development model
From: JOURNAL OF RARE DISEASES 2026;5(1):7-12
CountryChina
Language:Chinese
Abstract:
Guangzhou Women and Children's Medical Center (GWCMC) established a Rare Disease Medical Center in December 2023 and assumed responsibility for the construction of the Guangdong Provincial Rare Disease Quality Control Center. As a national children's regional medical center and a core institution for maternal and child health in the Guangdong-Hong Kong-Macao Greater Bay Area, GWCMC leverages its disciplinary strengths in maternal and pediatric specialties, centers on the diagnosis and treatment needs of rare diseases in women and children, and carries out a systematic layout in such aspects as clinical diagnosis, treatment and service system, technical system and platforms, scientific research innovation and academic influence, talent echelon and capacity building, as well as quality control and regional collaboration. This paper reviews the development trajectory of the GWCMC Rare Disease Center, summarizes its phased experience in high-quality development, and offers reflections on future directions.