[Current Status of Statistics and Future Improvement Plans on Rare Diseases in Korea- Focusing on 2021 Annual Report on the Rare Disease Patients in Korea].

This study presents statistical methods and findings from the 2021 Annual Report on the Rare Disease Patients in Korea and discusses future improvements. Using data from five institutions, the report tracks rare disease codes and provides statistics on incident cases, deaths, and healthcare utilization. In 2021, 55,874 new rare diseases were reported. Although the scope of rare disease statistics is expanding, further improvements are required. These improvements include creating new statistical indicators, implementing rare disease registration and statistics programs, and proposing an integrated information management system.