Gyeonggi Province Holds Healing Concert for Rare Disease Families

First Emotional Support Program by a Metropolitan Government
Over 300 Attendees Share Deep Empathy
A Time for Rest and Comfort with Lecture by Kim Mikyung and Popera Performance

Gyeonggi Province announced on the 27th that it held the "A Day of Rest for Your Shining Self" healing concert at the Suwon Convention Center on the 26th, with over 300 rare disease patients and their families in attendance.

'A Day of Rest for the Shining You' Healing Concert. Provided by Gyeonggi Province

This event was the first of its kind to be operated by a metropolitan local government in Korea, commissioned to the Gyeonggi Provincial Medical Center for the purpose of supporting rare disease patients. It was especially meaningful as a first step toward policies that empathize with the lives and emotions of rare disease patients, going beyond simply providing financial support for treatment. Rare diseases are defined as diseases with a patient population of 20,000 or fewer, or diseases whose prevalence is unknown due to diagnostic difficulties, as specified by procedures and criteria set by the Ministry of Health and Welfare.

The event brought together 15 patient organizations and families, including representatives from the Korea Alliance for Rare Diseases and the Korea Pediatric Intractable Disease Association.

Gyeonggi Province Governor Kim Dongyeon delivered a video message, stating, "Gyeonggi Province will stand with you so that no one has to suffer alone in a reality where the burden of treatment costs is increasing and even ordinary daily life is difficult due to gaps in the system." He added, "We will implement policies that carefully consider patients and their families, such as medical expense support for rare disease patients and 360-degree care."

Kim Yongsung, a member of the Gyeonggi Provincial Assembly, congratulated the event, saying, "In addition to treatment, care and emotional support for daily recovery must also be provided," and promised, "The Gyeonggi Provincial Assembly will work together to improve systems and expand budgets."

In the first part of the event, the mixed popera group Dcross soothed weary hearts with their music, and in the second part, lecturer Kim Mikyung gave a talk and provided empathetic answers to pre-submitted questions, receiving enthusiastic responses from the audience.

At the venue, a policy promotion booth was operated with the participation of four organizations: the Mobile Care Medical Center, the Mental Health Welfare Center, the Disabled Health and Medical Center, and the Public Children's Rehabilitation Hospital. This gave attendees the opportunity to obtain necessary information and receive consultations on-site.

Bae Junho, head of the Korea Glycogen Storage Disease Association and parent of a child with the rare disease glycogen storage disease, said, "Today's event was a great source of comfort and healing for parents of children with rare diseases. It was especially meaningful to be able to meet and greet other guardians face-to-face, which is usually difficult."

Another attendee said, "I heard that Gyeonggi Province is the only local government to have allocated a budget for rare diseases and host such an event. I hope that gatherings like this will spread to the 2 million rare disease families nationwide, and I ask for the interest and support of many local governments. Please help ensure that our children with rare diseases can enjoy ordinary daily lives."

Yoo Youngcheol, Director of the Health and Wellness Bureau, stated, "This event is a first step toward a sustainable support system. It will serve as an opportunity to identify unmet needs in the health, medical, and welfare sectors for rare disease patients and to establish a policy foundation for actively addressing them."

This content was produced with the assistance of AI translation services.