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KMID : 1143420200130211483
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Public Health Weekly Report
2020 Volume.13 No. 21 p.1483 ~ p.1490
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Rare Diseases Management in Korea
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Park So-Yeon
Hwang Young-Soon
Choi Eun-Kyoung
Jang Hye-Won
KIm Se-Eun
Ahn Youn-Jhin
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Abstract
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Rare diseases are characterized by a lack of information due to the large number of rare diseases and the low number of
patients, make them difficult to diagnose and treat. In addition, rare disease patients do not receive proper care due to the lack of experience in rare diseases among the majority of medical practitioners. Since 2001, medical financial assistance has been provided for rare disease patients with low-income in Korea, but there has been a limit to systematic support and management due to the absence of relevant laws. The ‘First National Plan for Rare Disease Management (2017-2021)’ was established to present a legal standard of rare diseases and to systematically manage them according to the implementation of the Rare Disease Management Act in December 2016. This report summarized what has been carried out to date: designation of rare diseases, medical financial assistance for rare diseases, reference centers, diagnosis support programs, and a national rare disease registration database.
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KEYWORD
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rare disease, national plan for rare disease, management for rare disease
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