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 a