[Key Findings from 2020 Annual Report on Rare Disease (2) Patients in Korea: Incidence, Mortality and Medical Service...

The Korea Disease Control and Prevention Agency approved the "Rare Diseases Statistics in Korea" as national statistics in 2019. It published the "2019 Annual Report on Rare Disease Patients in Korea" for the first time in December 2020. It systematically collects, refines, and analyzes data related to the occurrence and treatment of rare diseases every year and provides results. Accordingly, in the "2020 Annual Report on Rare Disease Patients in Korea (2)", detailed statistics of the year which were different from the "2020 Annual Report on Rare Disease Patients in Korea" announced in 2021 were included in the 2020 report. Therefore, the incidence, mortality, and medical service utilization of patients with rare diseases were included in the same annual report. In this report, we present the main results to promote the use of the "2020 Annual Report on Rare Disease Patients in Korea (2)," published in 2022. A total of 52,310 rare disease cases occurred among 694 diseases between January 1 and December 31, 2020, including 25,353 male (48.5%) and 26,957 female (51.5%). The death statistics referred to those who died in the same year among the cases in 2020. A total of 1,662 of 52,310 cases in 2020 died. The medical use of patients with rare diseases was calculated based on current benefit status and treatment details for the last 3 months after the registration of rare diseases in 2020. In the three months, 48,115 people were treated, and the average total cost per person was 3.1 million won. Among the treatment details, the injection, hospitalization, examination, and consultation fees were the largest in the order of payment. Since the "Annual Report on Rare Disease Patients" is written only for new patients registered for differential copayments, there are limitations, such as no information on unregistered patients. We will continue to strive to improve the "Annual Report on Rare Disease Patients" to provide more useful and accurate information.