Launch of Patient Association for 'Dangwonbyeong', a Rare Disease Affecting 400 People in Korea

The patient association for the rare disease 'Glycogen Storage Disease,' which has about 400 patients in Korea, has officially launched. The association plans to carry out various activities to raise awareness of the rare disease and support the families of patients.

Korean Party Member Patient Association Inauguration Ceremony and Camp.
[Photo by Korean Party Member Patient Association]

The Korea Glycogen Storage Disease Patient Association announced on the 23rd that it held its inauguration ceremony and a 2-day, 1-night camp with patients' families on the 20th. Glycogen Storage Disease is a rare congenital disorder in which the enzyme that produces blood sugar is not generated, resulting in the body's inability to regulate blood sugar. This can lead to critical conditions such as hypoglycemic shock, liver damage, and kidney disease due to damage to various organs. It is known that there are about 400 patients in Korea. Currently, there is no developed treatment, so management relies on strict dietary control and intake of special starches.

In Korea, Wonju Severance Christian Hospital is known as a specialized hospital. More than 90% of Glycogen Storage Disease patients receive treatment at Wonju Severance Christian Hospital, which operates the only dedicated clinic and ward for these patients in the country. Wonju Severance Christian Hospital and Wonju City provided significant support for the establishment of this patient association. Hospital Director Baek Soon-gu said, "The establishment of the patient association will be a great source of comfort among Glycogen Storage Disease patients," and added, "We will continue to do our best so that patients and their families can be free from suffering." Wonju Mayor Won Kang-su also stated, "The patient association will be a valuable start to drawing social attention to Glycogen Storage Disease," and "Wonju City will also pay close attention to and support improving proper awareness of rare diseases by addressing blind spots in medical services."

Additionally, domestic companies such as Lotte and Nongshim have been supporting Glycogen Storage Disease patients with various supplies for two consecutive years, providing great strength to rare disease patients. Kim Eun-sung, president of the patient association, said, "We are very pleased to be able to establish the patient association with the help of hospitals, local governments, and companies. Patients and parents of children with rare diseases often feel physically and mentally exhausted, but through the establishment of this association, we can comfort each other and become a great source of strength," adding, "We will strive to set a good precedent for rare disease patient associations through various activities such as raising social awareness and providing scholarships for medical staff."

Meanwhile, about 100 families of Glycogen Storage Disease patients participated in the inauguration event, which took place over 2 days and 1 night. The event was filled with various programs such as lectures on Glycogen Storage Disease, customized nutritional management methods, and family psychological counseling, providing time to care for the mind and share information. Professor Kang Yoon-gu of the Department of Pediatrics at Wonju Severance Christian Hospital, who spent the 2 days with the participants, said, "Since lifelong management is the only treatment for Glycogen Storage Disease, maintaining an unyielding spirit is even more important," and encouraged, "Even though it is difficult, I hope you support each other and take good care of your mental health. I will also be by your side for life to help you live a happier and healthier life than anyone else."

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