The Genetic and Rare Diseases Center of the Korea National Institute of Health hosted a two-day symposium at Yonsei Medical Center in Seoul, South Korea, recently. NORD was represented at this conference, which focused on rare-disease research and orphan product development.
NORD has also signed a Memorandum of Understanding with the Korean NIH to provide content for a new web site called "Helpline". This site will provide information in Korean on rare diseases and related topics for patients and their families.
The conference was opened with remarks from three members of the Korean Congress, who had come to underscore their commitment to addressing the needs of people with rare diseases. The various government agencies and academic institutions represented at the conference are working together to expand Korean involvement in medical research on rare diseases and other initiatives to assist affected patients and families.
Speakers from several Korean agencies, including the Centers for Disease Control and Prevention, Orphan Drug Center, and National Institute of Health, spoke on current activities related to research and orphan product development. Researchers from several Korean medical schools reported on their current work.
In addition, Doris Wu, PhD, Acting Chief of the National Institute on Deafness and Other Communication Disorders at the U.S. National Institutes of Health, spoke on research related to rare genetic disorders associated with deafness. Min-Chief Tseng, PhD, Vice President of the Taiwan Foundation for Rare Disorders, provided an update on policies related to rare diseases in Taiwan.
Hyun Min Shin, President of the Korean Organization for Rare Diseases (KORD), spoke on the activities of his organization to assist patients and families affected by rare diseases. NORDs representative, Mary Dunkle, Vice President for Communications, spoke on "The Role of Patient Organizations in the United States".
Participants in the recent conference in Korea |
Signing the Memorandum of Understanding between NORD and the Korean NIH |
Check here to read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
