Lee Geon-hee's Dream to Overcome Pediatric Cancer and Rare Diseases, Planting the Seed of Hope

Symposium Hosted by Pediatric Cancer and Rare Disease Project Team
Funded by 300 Billion KRW Donation from Lee Geon-hee's Family
Supporting Treatment Costs and Research on Pediatric Cancer and Rare Diseases

Han-Seok Kim, head of the Pediatric Cancer and Rare Disease Project Group at Seoul National University Hospital, never forgets a phone call he received one day in January 2021. At the time, he was serving as the director of Seoul National University Children's Hospital. The caller was a representative of the family of the late Lee Kun-hee, former chairman of Samsung. The family asked Seoul National University Children's Hospital to lend its support in helping children suffering from pediatric cancer and rare diseases. The amount donated by the family to the project group was 300 billion KRW, marking the largest donation in the pediatric medical field since the founding of the nation.

Illustration of the late Lee Kun-hee, former chairman of Samsung.

On the afternoon of the 8th, Seoul National University Hospital held a symposium titled "Opening Hope Together. Opening the Future" at the Yoon Deok-Byung Hall of the Biomedical Research Institute. The symposium was organized to convey hope for overcoming pediatric cancer and rare diseases and to promote growth among medical professionals and institutions nationwide.

The Pediatric Cancer and Rare Disease Project Group was established in May 2021 using the donation from Chairman Lee Kun-hee’s family as its funding source. The project group aims to build a treatment platform for children suffering from pediatric cancer and rare diseases across the country. Through this, it provides financial support for treatment costs to offer practical help to young patients while conducting research to overcome pediatric cancer and rare diseases. Over the next ten years, approximately 12,000 pediatric cancer patients and 5,000 rare disease patients, totaling around 17,000 children, are expected to benefit.

According to the project group, there are currently more than 7,000 identified types of pediatric rare diseases, making the development of diagnostic and treatment methods urgently needed. However, pediatric patients have a wider variety of diseases compared to adults, but the number of patients is small, making it difficult to collect cases. For this reason, it is challenging to establish standard treatment methods, and patients and their families bear a heavy burden as they cannot receive health insurance benefits.

Continuing the will of Chairman Lee Kun-hee’s family, the project group’s goal is to fundamentally solve these problems through research. According to the project group, the family expressed their desire to help children suffering from pediatric cancer and rare diseases, honoring Chairman Lee’s lifelong spirit of respect for humanity and affection for children. They set only two conditions: that patients and their families directly receive benefits, and that children patients across all regions nationwide receive equal benefits. Accordingly, the project group is building a joint database (DB) through problem-solving research projects to lay the foundation for overcoming pediatric cancer and rare diseases. This is because pediatric cancer and rare diseases are difficult to conquer and have a high possibility of recurrence.

Established with a donation of 300 billion KRW, the project group is divided into three divisions. First, 150 billion KRW is allocated to support high-cost genomic testing and immuno-oncology drugs for pediatric cancer patients that are not covered by insurance. For rare genomic testing, high-cost gene therapy, and new drug treatments for pediatric rare disease patients, 60 billion KRW is used. Lastly, 90 billion KRW is invested in joint research for diagnosis, treatment technologies, and drug research and development (R&D) for pediatric cancer and rare diseases. The project group explains that this aims to fundamentally solve pediatric cancer and rare diseases.

Current Status of Pediatric Cancer and Rare Disease Project. [Image provided by Seoul National University Hospital]

Project achievements of the Pediatric Cancer and Rare Disease Project Group.
[Image provided by Seoul National University Hospital]

Now in its third year since launch, medical professionals from across the country have joined forces to treat pediatric cancer and rare diseases. So far, 160 medical institutions nationwide that treat children and 1,071 medical professionals have participated in the project. The project group has selected 176 tasks to address, categorized as ▲48 pediatric cancer cases ▲19 pediatric rare disease cases ▲109 joint research cases, totaling 176. The project group expects the selection of research tasks and participation of medical professionals to expand further.

Many diagnoses and treatments have been made for rare diseases that were difficult to diagnose due to their nature. According to the project group, there are currently only about 60 professors nationwide who can treat pediatric rare diseases. Because of this, patients and their families had to endure a "diagnostic wandering," visiting multiple hospitals to get a diagnosis. Since the project group’s launch, a total of 2,984 diagnoses have been made, leading to 2,336 treatments. Specifically, diagnoses include ▲1,089 pediatric cancer cases ▲1,746 pediatric rare disease cases ▲1,149 joint research cases. Treatments include ▲14 pediatric cancer cases ▲627 pediatric rare disease cases ▲1,695 joint research cases.

A large amount of data has also been collected for building the joint DB, one of the project group’s main goals. The project group plans to establish a virtuous cycle structure so that data collected through the nationwide cooperative network can be used by anyone for diagnosis and treatment. Until now, patient data had been scattered, making diagnosis difficult. So far, a total of 6,193 cohorts have been registered through the joint database-based treatment platform. The project group plans to establish standardized treatment methods through this and build a system where all patients nationwide can receive equal medical benefits.

Seoul National University Hospital held a symposium on the 8th at the Yoon Deok-byeong Hall of the Biomedical Research Institute under the theme "Opening Hope Together. Opening the Future." Symposium participants and families of patients are taking a commemorative photo. Choi Young-moo, President of Samsung Social Contribution Division (1st from left in the back row), Kim Young-tae, Director of Seoul National University Hospital (2nd from left in the back row), Kim Han-seok, Head of Pediatric Cancer and Rare Disease Project Group (7th from left in the back row), Choi Eun-hwa, Deputy Director of Pediatric Care at Seoul National University Hospital (3rd from right in the back row), Choi Jae-hyung, Member of the National Assembly from the People Power Party (2nd from right in the back row), Park Jung-shin, Deputy Director of Medical Care at Seoul National University Hospital (1st from right in the back row).
[Photo by Seoul National University Hospital]

At the symposium, an exhibition of flower designs colored by about 30 child patients and their families was held under the theme "Garden of Hope." The project group explained that the exhibition symbolizes the donor’s great will as the soil and the hope of patient families as the seeds that bloom into flowers. During the symposium, a ceremony was held where project group and hospital officials presented framed flower designs drawn by the child patients. The children also received the latest tablet PCs from Samsung Electronics.

A child patient who participated in the symposium said, "I want to tell everyone who is sick that just enduring it is admirable," and added, "I hope more research will be conducted for patients without treatment methods so that someday everyone can be healthy."

Young-Moo Choi, head of Samsung’s Corporate Social Responsibility, said, "Chairman Lee Kun-hee’s will is that it is our mission to care for all children so they can grow up healthy and happy," and added, "All Samsung employees sincerely hope that the pediatric cancer and rare disease overcoming project will surely succeed." Han-Seok Kim, head of the Pediatric Cancer and Rare Disease Support Project Group, said, "Through this symposium, we hope to create a virtuous cycle by encouraging participation from regional institutions and medical professionals nationwide, ultimately opening the path to overcoming pediatric cancer and rare diseases."

Meanwhile, attendees at the event included Jae-Hyung Choi, member of the National Assembly from the People Power Party; Young-Moo Choi, head of Samsung’s Corporate Social Responsibility; Young-Tae Kim, director of Seoul National University Hospital; Eun-Hwa Choi, deputy director of pediatric care (director of the Children’s Hospital); and Han-Seok Kim, head of the project group.

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