South Korean rare disease medical and welfare reforms

South Korea is experiencing increased pressure to reform its approach to rare diseases through both medical screening initiatives and social welfare improvements.

On the medical front, the government is launching a state-led newborn genomic screening program coordinated by the Korea National Institute of Health (NECA). The program aims to test approximately 600 infants annually for severe rare diseases, targeting a diagnostic turnaround within seven days. Concurrently, patient advocates have petitioned for the establishment of an independent National Rare-Disease Center to provide 24-hour care and coordinated services.

Parallel to these medical developments, families managing long-term rare diseases are reporting significant gaps in the national welfare system. Current issues include bureaucratic hurdles where insurance payouts or specific vehicle requirements can disqualify families from essential benefits. Experts and researchers are calling for a ‘one-stop’ support system to replace the current application-based model, which often places an overwhelming administrative burden on caregivers already struggling with medical and financial crises.