[A summarized unofficial version of the press release]
KDCA Hosts 9th Rare Disease Day Commemoration Event and International Symposium
- The 9th Rare Disease Day Commemoration Event aimed to raise public awareness of rare diseases and empower patients and their families to overcome these challenges.
- The International Symposium served as a platform to share insights into rare disease policies in Korea and beyond, showcase research findings, and explore strategies for policy development.
Osong, 28th February 2025 – The Korea Disease Control and Prevention Agency (KDCA) hosted the 9th Rare Disease Day Commemoration Event and the International Symposium on Friday, February 28, at the Nine Tree Premier Rokaus Hotel in Yongsan-gu, Seoul. The event, held at 10:00 a.m., was organized in observance of Rare Disease Day, designated under Article 4 of the Rare Disease Management Act, which marks the last day of February each year.
Bringing together more than 150 attendees, including KDCA Commissioner Dr. Youngmee Jee, patients and their families, rare disease advocates, and medical professionals, the event alongside the symposium aimed to foster awareness, provide encouragement, and recognize efforts in combating rare diseases.
The commemoration event opened with a commemorative address by Commissioner Dr. Youngmee Jee, followed by congratulatory remarks from National Assembly Member Sunwoo Kang, representing the Health and Welfare Committee, and Chairman Ro Sean Kim of the Seungil Hope Foundation. Additional messages of encouragement and congratulations were delivered via video by Chairperson Ju-min Park of the National Assembly’s Health and Welfare Committee and National Assembly Member Mi-ae Kim.
A special session featured personal stories from the 2024 essay contest winners, themed “My Experience Overcoming a Rare Disease.” Contest winners shared their journeys through video messages and delivered acceptance speeches, enhancing public understanding of their lives. This session also introduced participants to various rare disease patient associations.
During the event, an award ceremony was held, where 21 individuals were recognized with commendations from the KDCA Commissioner and the Minister of Health and Welfare for their dedication to rare disease treatment and research. Among the awardees were Chairman Jae Hak Kim of the Korean Organization for Rare Diseases, honored for his commitment to patient support, and Dr. Hoon Chul Kang of Severance Hospital, recognized for his significant contributions to genomic research and the establishment of the Hanim Precision Medicine Center for Rare Genetic Diseases. Additionally, seven winners of the 2024 essay contest were awarded.
Following the commemoration event, the International Symposium featured expert presentations divided into two key sessions: Policy Developments (Part 1) and Advances in Diagnosis, Treatment, and Research (Part 2), highlighting both national and international efforts.
In Part 1, key figures in rare disease policy presented on national and global initiatives:
Dr. Jee Young Kim, Director of the Rare Disease Management Division at KDCA, outlined Korea’s current policies on rare diseases.
Dr. Rüdiger Krech, Director-General for Health Promotion at WHO, provided the WHO’s policy direction for rare diseases.
Dr. David Pearce, Chair of the International Rare Disease Research Consortium (IRDiRC), shared insights into rare disease policy in the United States and introduced IRDiRC's roles and initiatives.
Professor Chong-Kun Cheon of Busan National University School of Medicine highlighted key achievements Korea's Rare Disease Diagnostic Support Program.
In Part 2, discussions moved on to cutting-edge research and diagnostic advancements:
Dr. Mi-Hyun Park, Senior Staff Scientist at the National Institute of Health, presented findings on the use of Whole Genome Sequencing (WGS) in NICU settings for rare disease diagnosis.
Professor Jong-Hee Chae of Seoul National University Hospital introduced the Korean Undiagnosed Program.
Professor Hidehiro Mizusawa of Japan’s National Center of Neurology and Psychiatry provided an overview of Japan’s research efforts in undiagnosed rare diseases.
Professor Jin-Kuk Kim of KAIST discussed the latest research advancements in personalized therapeutics for rare disease patients.
To further amplify awareness, regional organizations dedicated to rare diseases hosted various events nationwide, including the Rare Disease Awareness Campaign during the final week of February, aiming to strengthen public understanding and patient support.
Dr. Youngmee Jee reaffirmed KDCA’s commitment to rare disease research, global collaboration, and policy development, stating: “Rare diseases are not just a medical issue but a societal concern requiring continuous research, strong social support, and national attention. We will continue working to make a meaningful impact by reinforcing policy measures, fostering research, and expanding international cooperation.”