South Korean rare disease patient support initiatives

South Korea is implementing new support measures to alleviate the financial and medical burdens faced by patients with rare diseases.

In November, the Ministry of Health and Welfare will launch a pilot health insurance program providing specialized nursing hospital services for patients with severe muscular rare diseases, such as ALS. This program shifts from fixed-rate payments to a model compensating hospitals based on actual resources used. It includes multidisciplinary care, intensive beds, emergency respiratory response, and post-discharge community services. However, concerns remain regarding hospital availability, waiting lists, and staffing shortages.

Concurrently, the Korea Disease Control and Prevention Agency (KDCA) has expanded support for specialty foods. Through a partnership with CJ CheilJedang and the Korea Rare and Intractable Diseases Association, a purchasing system for low-protein instant rice has been established for patients with 28 types of congenital metabolic disorders. This initiative aims to stabilize costs for patients who previously faced significant markups. The KDCA also plans to survey demand for other dietary items and intends to phase out certain income and property criteria for medical expense support by 2027, with a goal of expanding support to all rare diseases by 2028.