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KMID : 1143420220150452789
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Public Health Weekly Report
2022 Volume.15 No. 45 p.2789 ~ p.2807
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Key Findings from 2020 Annual Report on Rare Disease Patients in Korea: Incidence, Mortality and Medical Service Utilization
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Choi Eun-Kyoung
Lee Ji-Won M.
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Abstract
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In order to prepare a plan for management of rare diseases, it is essential to obtain information on the occurrence and
prevalence of these diseases in the domestic population, and use that information as the basis for establishing relevant policies. The Korea Disease Control and Prevention Agency (KDCA) has established the Rare Disease Statistics Project after the enforcement of the Rare Disease Management Act in 2016, to provide information about the occurrence of these diseases and the associated death rate in the Republic of Korea. This report presents the main findings from the 2020 Annual Report on the Rare Disease Patients in Korea. According to the 2020 Annual Report, from January 1 to December 31, 2020, a total of 691 different kinds of rare disease newly affected 52,069 patients, of whom 25,245 (48.5%) were males and 26,824 (51.5%) were females. Death statistics were compiled from the number of patients who had registered as rare disease patients and died in 2019. A total of 1,596 patients had died of rare diseases in that year. The statistics about the National Health Insurance Service Benefit were obtained for the patients who received the benefit within three months after their registration as newly affected patients. It was noted that 52,112 patients received the benefit and the total medical expenses per person amounted to 3.46 million won. The Annual Report is limited by the fact that the data were collected only from patients who registered under the National Health Insurance Act and Medical Care Assistance Act. However, it is still significant because it shows the official current status relating to rare diseases, including occurrence, deaths, and medical services received by the patients.
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KEYWORD
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Rare diseases, Rare disease statistics, Official statistics
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