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Coordinating Center for Rare Disease
We aim to improve the quality of medical services provided to patients with rare diseases as a Rare Disease Central Support Center.
Regional Hubs of SNUH Rare Disease Center
The Seoul National University Hospital Rare Disease Center was designated as a ‘Coordinating Center for Rare Disease’ in January 2019, as the Center for Disease Control and Prevention expanded and operated base centers by region to strengthen medical accessibility and diagnosis-management linkage for patients with rare diseases.
As a central support center of national care for rare diseases, we aim to improve the quality of medical services provided to patients with rare diseases. We manage 11 regional hub centers in Gyeonggi (Northwest & South), Gyeongsang, Chungchung, Jeolla, Jeju, and other regions to create a synergistic network. We are also involved in establishing policies that support researchers and patients in the field of rare diseases.
Operating Central Organization for Regional Hubs
- Organizing and operating a central organization composed of stakeholders (base hubs cooperative hospitals) for major projects in the community
- Support for diagnosis-management network operation between base centers
- Collaborative activities to establish and implement rare disease management plans
Developing and providing Educational Contents to nurture Medical Professionals
- Development and distribution of training manuals, provision of certification / completed training systems, quality management of base center training, etc.
- Providing accurate disease information to the public by professionally and systematically collecting information on rare diseases that are marginalized both in medicince and the general public.
- Development of promotional brochures, video materials, and other public relations tools on rare diseases to familiarize new medical staff, patients, guardians on the subject.
Supporting the National Rare Disease Research Plan
- Identifying rare diseases and clinical research capabilities focused on regional hub centers
- Identifying basic research capabilities of regional centers and related organizations and database
- Research on standard guidelines for diagnosis and treatment of rare diseases
Designation and operation support for specialized organizations for rare diseases
- Revitalization of base centers by region and rare diseases nationwide, and stabilization of return to base centers
- Rare disease registration statistics and specialized institutional workforce training support
- Development and implementation of research tools such as patient satisfaction and improvement requirements through cooperation with the Seoul National University Hospital Public Health Medical Center
Visualization of Rare Disease Regional Hub Centers
- Rare Disease center
Seoul National University Hospital - Gangwon Regional Hub Center
Wonju Severance Christian Hospital - Northwestern Gyeonggi Regional Hub Center
Inha University Hospital - Southern Gyeonggi Regional Hub Center
Ajou University Hospital - Chungbuk Regional Hub Center
Chungbuk National University Hospital - Daegu, Gyeongbuk Regional Hub Center
Chilgok Kyungpook National University Hospital - Chungnam Regional Hub Center
Chungnam National University Hospital - Jeonbuk Regional Hub Center
Jeonbuk National University Hospital - Ulsan · Gyeongnam Regional Hub Center
Yangsan Pusan University Hospital - Busan Regional Hub Center
Inje University Busan Paik Hospital - Jeonnam Regional Hub Center
Hwasun Chonnam National University Hospital - Jeju Regional Hub Center
Jeju National Hospital
- Rare Disease center
Seoul National University Hospital - Gangwon Regional Hub Center
Wonju Severance Christian Hospital - Northwestern Gyeonggi Regional Hub Center
Inha University Hospital - Southern Gyeonggi Regional Hub Center
Ajou University Hospital - Chungbuk Regional Hub Center
Chungbuk National University Hospital - Daegu, Gyeongbuk Regional Hub Center
Chilgok Kyungpook National University Hospital - Chungnam Regional Hub Center
Chungnam National University Hospital - Jeonbuk Regional Hub Center
Jeonbuk National University Hospital - Ulsan · Gyeongnam Regional Hub Center
Yangsan Pusan University Hospital - Busan Regional Hub Center
Inje University Busan Paik Hospital - Jeonnam Regional Hub Center
Hwasun Chonnam National University Hospital - Jeju Regional Hub Center
Jeju National Hospital