Abstract

A rare disease is a disease with a prevalence of ≤20,000 people or unknown prevalence because of difficulty in diagnosis, as determined standards set by the Ministry of Health and Welfare. In 2024, 66 new rare diseases were added to the list, bringing the number of nationally managed rare diseases from 1,248 (2023) to 1,314 (2024). In a retrospective study of rare disease patients presenting to pediatric dentistry, the top diseases included 23 cases of Lennox-Gastaut syndrome, 20 cases of Moyamoya disease, 17 cases of Tetralogy of Fallot. In the study of pa tient cooperation, about 58.3% of patients reported negative cooperation. 113 patients (30.8%) received general anesthesia for dental treatment and 55 patients (15.0%) were sedated. According to a survey of parents of children with rare diseases, the highest need for payment support for dental treatment for children with rare diseases is prosthetic treatment (59%), followed by orthodontic treatment (58%), general anesthesia and hospitalization (46%). When it comes to dental care for children with rare diseases, caregivers feel that the most needed improve ment is more specialized dental facilities (54%), followed by expanded reimbursement (49%) and more specialized dental staff (42%). When patients with rare diseases are able to eliminate oral pain through dental care and are able to eat better through the mouth, their systemic health can improve. Therefore, it is important to continue to advocate for policy proposals to provide national coverage for dental care so that patients with rare diseases have access to quality dental care.