Yangsan City Public Health Center Hosts Tailored Support Event for Rare Disease Families

Integrated Support:
Educational Seminar, Pediatric Care Room, Psychological Counseling, and Self-Help Group

The Yangsan City Public Health Center in South Gyeongsang Province operated a variety of support programs for families of pediatric patients in conjunction with the "Pitt-Hopkins Syndrome" educational seminar held at the Yangsan Pusan National University Hospital Rare Disease Center on May 29.

Yangsan City Public Health Center Rare Disease Patients and Family Support Project. Provided by Yangsan City

This seminar was organized to share professional information and treatment directions regarding Pitt-Hopkins Syndrome. To help caregivers focus on the educational content, the Yangsan City Public Health Center provided a separate care room for pediatric patients and offered a horticultural activity program for children, which was met with an enthusiastic response.

In addition, the Yangsan City Mental Health Welfare Center provided on-site psychological counseling services for families, creating an opportunity for them to share and heal from the emotional difficulties caused by rare diseases.

During the self-help group meeting held over dinner, medical staff also participated, making it a meaningful occasion for rare disease families and healthcare professionals to share their experiences and concerns. This rare disease family self-help group, held for the first time this year, is a new project supported by provincial funds for 2025. It will be held four times a year and will be linked with rare disease-specific educational seminars organized by the Yangsan Pusan National University Hospital, the rare disease center for the Gyeongnam region.

One participant expressed gratitude, saying, "I always wanted to focus on the seminar, but it was difficult because of childcare responsibilities. I am so thankful for the separate care provided today. I could genuinely feel your sincere care and support."

Kim Jeongmi, Director of the Yangsan City Public Health Center, stated, "I hope this was a valuable time for rare disease families to empathize and find comfort. We will continue to pay close attention so that no one is marginalized and everyone can communicate and live together within the local community."