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  • ¡®Improve rare disease designations standards for equity'
  • by Lee, Jeong-Hwan | translator Kim, Jung-Ju | Mar 7, 2023 05:38am
Different special calculation systems apply to the same rare diseases
Professor Hyun-Young Kim ¡°non-designation of rare diseases that are not congenital increase burden of treatment cost in patients with acquired diseases¡±
¡®Discussions for national measures to manage life-threatening rare diseases¡¯ held by the National Assembly
The claim that Korea¡¯s rare disease designation standards should be improved and expanded to ease the disease burden borne by patients from drug costs, etc.

The request arose with the rising need to address the irrationalities in the current rare disease designation system, such as those from the unclear diagnostic criteria set due to the extremely small number of patients or irrational standards set for acquired (secondary) rather than congenital diseases.

On the 6th, Professor Hyun-Young Kim of Pediatric Surgery at Seoul National University Hospital claimed so during her presentation at the ¡®Discussions for a national measure to manage life-threatening rare diseases¡¯ that was held at the Members' Office Bu
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