Hope Through Photos... Seoul National University Hospital Conducts 'Rare Disease Photo Project'

“I don't think I've ever had a proper photo shoot like this since the 100-day photo. Seeing my child smile for the first time is truly surprising and makes me so happy.”

From Chungnam, Gangwon, Daegu, and various regions across the country, a total of 20 families gathered at Seoul National University Hospital from the 5th to the 8th. All of them are families with children suffering from undiagnosed rare diseases, who visited the hospital to take family photos.

The Pediatric Cancer and Rare Disease Support Project Group at Seoul National University Hospital announced on the 19th that they held a 'Rare Disease Photo Project,' inviting children with undiagnosed rare diseases and their families nationwide who are participating in the Lee Kun-hee Pediatric Cancer and Rare Disease Overcoming Project to take family photos.

People are participating in the 'Rare Disease Photo Project' event held at Seoul National University Hospital.

This project was conducted in collaboration with the Wilhelm Foundation in Sweden, which supports the Undiagnosed Diseases Network International (UDNI). UDNI is an international organization where experts from universities, hospitals, and research institutes in 41 countries worldwide gather to continue academic activities and collaborative research. In Korea, the Rare Disease Center at Seoul National University Hospital is a member and actively participates.

The project was planned to help families of rare disease patients, who are marginalized and discouraged due to the lack of diagnosis, develop a positive self-image and to provide an opportunity to improve awareness of rare diseases. Photos and cases of rare disease patients taken during the project are shared with UDNI and others, and are utilized for the diagnosis and treatment of patients worldwide, including those in Korea.

Chae Jong-hee, Head of the Rare Disease Division at the Pediatric Cancer and Rare Disease Support Project Group, said, "Medical staff will never give up in finding the cause and moving closer to treatment," adding, "I believe that social interest and corporate donations play a significant role as a catalyst."

Meanwhile, the Pediatric Cancer and Rare Disease Support Project Group, operated with donations from the late Chairman Lee Kun-hee, has been conducting a rare disease diagnosis support project based on genomic and functional research since September 2021 to assist in diagnosing rare disease children patients, including undiagnosed cases. Sixteen hospitals nationwide, including Seoul National University Hospital, Kyungpook National University Hospital, Chungbuk National University Hospital, Yangsan Busan National University Children's Hospital, and Chonnam National University Hospital, are participating. As of July 2023, they have provided free support for genomic analysis and diagnosis using various advanced techniques for approximately 1,900 patients and their families. By 2030, a total of about 30,000 patients and families are expected to receive testing support.

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