[The Progress of Designation of Rare Disease for National Management]

Rare diseases are characterized by a lack of disease-related information and difficulty in diagnosis or treatment due to a wide variety of diseases and a low prevalence of each disease. To manage rare diseases and support patients with rare diseases at national level, the Korean government has designated the Rare Diseases for National Management. These diseases are supported for diagnosis and medical financial assistance, leading to related studies on disease diagnosis and treatment in the Republic of Korea. This report introduces definitions, criteria, and procedures for Rare Diseases for National Management. It is intended to inform on the progress of the Designation of Rare Diseases for National Management and its achievements thus far; five years have passed since the initial designation in 2018.