[National Fundholding System for Rare Disease in the Republic of Korea]

A rare disease is one for which the prevalence population is less than 20,000 or is unknown owing to difficult diagnosis. Furthermore, it refers to a disease designated and announced in accordance with Article 2 of the Enforcement Rule of the Rare Disease Control Act. The 'National Fundholding System for Rare Disease' (the National System) targets health insurance subscribers registered under the 'Special Case for Rare Disease Calculation.' Considering the economic burden of patients with rare diseases, recipients are selected through income and property investigations. The income standard for children and adolescents with rare diseases was expanded in 2023 from less than 120% of the standard median income to less than 130%. Furthermore, insurance for children and adolescents with rare diseases has been strengthened. Meanwhile, in 2022, super-expensive rare disease treatments were covered. In such situation, the financial burden of local governments receiving the support for the treatment is being caused. In addition, there is request that the standards for income and property for the selection of beneficiaries of the National System have to be eased. There is also a demand for streamlining the submission of income and property investigation documents. The Division of Rare Disease Management of the Korea Disease Control and Prevention Agency will review ways to secure the continuity and financial soundness of the National System in the future. Plans are underway to improve the income and property standards and support system.