Characterizing Families of Pediatric Patients with Rare Diseases and Their Diagnostic Odysseys: A Comprehensive Survey Analysis from a Single Tertiary Center in Korea

• Main Authors: Jaeso Cho (Author), Young Shin Joo (Author), Jihoon G. Yoon (Author), Seung Bok Lee (Author), Soo Yeon Kim (Author), Jong Hee Chae (Author), Yong Jin Kwon (Author)
• Format: Book
• Published: Korean Child Neurology Society, 2024-07-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.

Purpose Rare diseases necessitate consistent access to specialized health services. In Korea, despite the growing socioeconomic burden, insufficient comprehensive research is available on patients with rare diseases and their families, particularly concerning factors influencing the length of time t...