Korean Lawmakers Urge Prioritizing Rare Disease Policies

On March 3, Representative Seo Young-seok of the Democratic Party, serving on the National Assembly Health and Welfare Committee, held a press conference at the Assembly’s communication hall together with the Korean Rare & Intractable Disease Association. The event, titled “Policy Recommendations to Alleviate the Burden of Rare Diseases,” highlighted the diagnostic and treatment delays, as well as the economic and caregiving burdens faced by patients and families of rare diseases in Korea. The speakers cited recent research indicating that 58 rare diseases in the country impose additional burdens compared with control groups, and they called attention to institutional gaps and improvement tasks in current rare‑disease policy. The press conference aimed to raise awareness of these challenges and propose concrete policy measures to address the systemic blind spots affecting rare‑disease patients.