A few patients can only make a small noise. Despite the need for the improvement of the rare disease treatment environment, which has risen year after year, the voice of its patients that implore difficulties has never ceased to exist.

In particular, there are cases where a drug is available, but due to the small number of eligible patients, it is difficult to prove the drug’s cost-effectiveness and predict the potential financial expenditures, rendering the drug’s reimbursement listing difficult in Korea.

According to the 'Status of Severe Diseases that were applied Special Calculation' released by the Health Insurance Review and Assessment Service, rare and incurable diseases account