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  • HIRA, "Will enhance the monitoring of rare disease drugs"
  • by Jung, Heung-Jun | translator Hong, Ji Yeon | Sep 26, 2025 06:12am
Lee So-young, Director of HIRA's Pharmaceutical Performance Assessment Division, emphasized the need for establishing a sustainable system
"More than half of the newly approved drugs are rare disease drugs¡¦need to improve the management of uncertain evidence monitoring"
With the rapid increase in newly emerging treatments for rare and severe diseases, there have been suggestions for establishing sustainable systems, such as strengthening post-market management and creating a separate dedicated fund.

It was explained that monitoring uncertain evidence resulting from expedited approvals and improving patient access through a separate fund, similar to overseas models, are necessary steps.

On September 25, the Health Insurance Review & Assessment Service (HIRA) hosted a symposium at the St. Mary's Hospital Seong-ui Hall in Seoul on the future direction and social ethics of rare and severe disease treatment.

 ¡ã Lee So-young, Director of HIRA
During the symposium Lee So-young, Director of HIRA's Pharmaceutical Pe
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