KDCA Designates 17 Regional Specialized Centers for Rare Diseases

Strengthening Medical Infrastructure through Operation of Rare Disease Specialized Institutions

The Korea Disease Control and Prevention Agency (KDCA) announced on the 23rd that it will newly designate 17 specialized institutions for rare diseases by region. The purpose is to strengthen the medical support system through the operation of specialized institutions and to promote the national registration project.

Source: Korea Disease Control and Prevention Agency

Specialized institutions for rare diseases are medical institutions that perform tasks such as patient treatment, research on rare disease management, and rare disease registration and statistical projects in accordance with Article 14 of the Rare Disease Management Act.

The KDCA designated 17 institutions as the first term (2024?2026) regional specialized institutions for rare diseases based on applications from regional medical institutions through a public contest, evaluating whether they meet designation criteria such as personnel and equipment.

Until now, the KDCA has built medical infrastructure through the rare disease hub center project. Starting this year, it plans to strengthen access to treatment and support the performance of responsible medical functions within each region through the newly promoted regional specialized institutions for rare diseases.

Additionally, based on these specialized institutions, the KDCA will newly promote the "National Rare Disease Patient Registration Project" to systematically collect and analyze statistics on the occurrence and medical use of rare diseases in Korea, utilizing the data for policy making, research, and statistical production.

Ji Young-mi, Commissioner of the Korea Disease Control and Prevention Agency, stated, "Through the regional specialized institutions for rare diseases, the capacity and expertise in rare disease management will be strengthened, and the promotion of the rare disease patient registration project is expected to advance national statistics."