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Samsung family donation helps doctors make guideline for rare pediatric kidney disease

Published: 28 Aug. 2025, 16:55 Updated: 28 Aug. 2025, 17:45

A pediatric nephrotic syndrome patient with swelling around the eyes caused by edema [KOREAN SOCIETY OF PEDIATRIC NEPHROLOGY, SEOUL NATIONAL UNIVERSITY CHILDREN'S HOSPITAL]

When a four-year-old boy developed cold-like symptoms, his parents took him to a local clinic. The illness subsided within days, but swelling appeared across his entire body. Alarmed, his family rushed him to Seoul National University Children’s Hospital, where blood and urine tests led to an unexpected diagnosis: pediatric nephrotic syndrome.

The rare kidney disorder causes protein to leak into urine, leading to edema and a drop in albumin levels in the blood. About 2,500 to 3,000 children in Korea are registered with the condition, which often appears suddenly and without a known cause.

For the first time, Korean doctors have issued national clinical guidelines for treating the illness, thanks to funding from late Samsung Chairman Lee Kun-hee’s Child Cancer & Rare Disease Project. Doctors had spent three years compiling data and building consensus to address the lack of standardized care for young patients.

Pediatric nephrotic syndrome usually strikes children between the ages of two and six, with most cases improving by adulthood. The exact cause is unknown. About 90 percent of patients respond to steroid treatment, while the remaining 10 percent are steroid-resistant.

While steroid and immunomodulatory therapies are effective for many, they carry risks, including stunted growth, and frequent relapses often lead to overtreatment. The disease rarely proves fatal but significantly lowers quality of life.

In online communities for kidney disease patients, it is not uncommon to find posts such as, “I was diagnosed with nephrotic syndrome at age five, but even as a high school junior, I still suffer frequent relapses. I’m about to become an adult, and it scares me more and more.”

A relief of the late Samsung Chairman Lee Kun-hee is displayed in the lobby of Seoul National University Children’s Hospital on July 26, 2024. [JOONGANG ILBO]

With these concerns in mind, doctors from the Korean Society of Pediatric Nephrology began working together in 2022. Because nephrotic syndrome is a rare disease and patients are hard to find, they pooled and analyzed extensive research data using a kind of “collective intelligence.”

Their goal was to establish systematic clinical guidelines to ensure safe and effective treatment from the onset of illness. The lack of standardized practices also meant that some physicians were missing out on the latest therapies, underscoring the need for unified guidance in clinical settings.

The nationwide study, which went beyond the scope of individual hospitals, was made possible by a 300 billion won ($216.3 million) donation from the family of the late Samsung Chairman Lee Kun-hee in 2021. Previously, researchers had to gather and share patient cases piecemeal, often compiling them manually in Excel files, but the funding greatly streamlined and systematized the process.

“Unlike adult diseases, rare pediatric conditions are often overlooked when it comes to research funding,” said Prof. Kang Hee-gyung of Seoul National University Hospital. “Without the Lee Kun-hee donation, it would have been nearly impossible to organize a multihospital project. We were able to track patients in real time and collect samples for systematic research.”

With coordinated research across two years, the Korean Society of Pediatric Nephrology was able to publish its first evidence-based guidelines in July: the Clinical Practice Guideline for Steroid-Sensitive Nephrotic Syndrome in Children and Adolescents.

The guidelines recommend treatment approaches tailored to Korea, including the use of deflazacort and cyclophosphamide — drugs less commonly prescribed in Europe or the United States due to cost or limited adoption.

The Korean Society of Pediatric Nephrology was able to publish its first evidence-based guidelines on pediatric nephrotic syndrome in July, titled the Clinical Practice Guideline for Steroid-Sensitive Nephrotic Syndrome in Children and Adolescents. [KOREAN SOCIETY OF PEDIATRIC NEPHROLOGY]

“Deflazacort has fewer side effects but is rarely used in Europe because of its high price,” Prof. Kang said. “Cyclophosphamide, meanwhile, is cost-effective even though it’s seldom prescribed in Western countries.”

The move places Korea ahead of most countries in national-level protocols. Before Korea, only the International Society of Nephrology, Japan and India had released comparable guidelines.

Prof. Lee Hyun-kyung of Chung-Ang University Hospital said the guidelines will help unify treatment approaches.

“Until now, doctors had to rely on individual judgment, leading to inconsistencies,” Prof. Lee said. “With the new recommendations, we can provide care that is more standardized and better suited to the Korean medical environment.”

The project does not end here. In September, physicians plan to share the guidelines with patients and their families, offering updated advice on treatment and disease management. By next year, they also aim to release recommendations for steroid-resistant cases. Long-term plans include developing biomarkers to help predict treatment outcomes and improve personalized care.

This article was originally written in Korean and translated by a bilingual reporter with the help of generative AI tools. It was then edited by a native English-speaking editor. All AI-assisted translations are reviewed and refined by our newsroom.
BY JUNG JONG-HOON [[email protected]]