The need for improvement emerges every year, but patients with rare diseases are still struggling. In particular, even if there are drugs, the number of patients is so small that it is difficult to prove the cost effectiveness and predict financial consumption, making it difficult to register insurance benefits. There were many opinions this year. Kang Sun-woo, a member of the National Assembly Health and Welfare Committee, began holding a parliamentary debate in May to strengthen access to new drugs for rare genetic diseases, and in August, Kang Byeongwon, Kim Won-i, Seo Young-seok, and Shin Hyun-young held a public hearing to discuss ways to improve the treatment environment for rare diseases.

But the