| 희귀 신경계질환 극복을 위한 전문가 단체와 환자 단체와의 협력 |
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김기훈1, 권영남1, 김준순2, 김수영3, 김승우1, 박기홍4, 박진성5, 봉정빈6, 석진명7, 석흥열8, 이혜림9, 조은빈10, 전병준11, 오성일12, 대한신경면역학회 홍보위원회 |
1연세대학교 의과대학 세브란스병원 신경과
2분당서울대학교병원 신경과
3충남대학교병원 신경과
4하남보바스병원 신경과
5경북대학교 의과대학 칠곡경북대학교병원 신경과
6조선대학교병원 신경과
7순천향대학교천안병원 신경과
8경북대학교 의과대학 경북대학교병원 신경과
9고려대학교 구로병원 신경과
10창원경상국립대학교병원 신경과
11고신대학교복음병원 신경과
12경희대학교 의과대학 경희대학교병원 신경과 |
| Collaboration between Medical Association and Patient Organizations to Overcome Rare Neurological Disorders |
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Ki Hoon Kim1, Young Nam Kwon1, Jun-Soon Kim2, Sooyoung Kim3, Seung Woo Kim1, Kee Hong Park4, Jin-Sung Park5, Jeong Bin Bong6, Jin Myoung Seok7, Hung Youl Seok8, Hye Lim Lee9, Eunbin Cho10, Byeoung-Jun Jeon11, Seong-il Oh12, 대한신경면역학회 홍보위원회 |
1Department of Neurology, Severance Hospital, Yonsei University College of Medicine, Seoul, Korea
2Department of Neurology, Seoul National University Bundang Hospital, Seoul National University College of Medicine, Seongnam, Korea
3Department of Neurology, Chungnam National University Hospital, Daejeon, Korea
4Department of Neurology, Bobath Hospital, Hanam, Korea
5Department of Neurology, School of Medicine, Kyungpook National University, Kyungpook National University Chilgok Hospital, Daegu, Korea
6Department of Neurology, Chosun University School of Medicine, Gwangju, Korea
7Department of Neurology, Soonchunhyang University Cheonan Hospital, Soonchunhyang University College of Medicine, Cheonan, Korea
8Department of Neurology, School of Medicine, Kyungpook National University, Kyungpook National University Hospital, Daegu, Korea
9Department of Neurology, Korea University Guro Hospital, Seoul, Korea
10Department of Neurology, Changwon Gyeongsang National University Hospital, Changwon, Korea
11Department of Neurology, Kosin University Gospel Hospital, Busan, Korea
12Department of Neurology, Kyung Hee University Hospital, Kyung Hee University College of Medicine, Seoul, Korea |
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Received: 8 March 2025 • Revised: 26 April 2025 • Accepted: 19 June 2025 |
| Abstract |
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Rare neurological disorders present significant challenges in diagnosis, treatment, and patient care. Despite their low prevalence, these conditions affect millions of people, necessitating collaboration between medical association and patient organizations or patient advocacy groups. This review explores the partnership between the Korean Society for Neuroimmunology and the Korean Multiple Sclerosis Society as a model of effective cooperation. Patient organizations play a vital role by providing support that includes education, emotional assistance, and policy advocacy. On the other hand, medical associations contribute through research, development of treatment guidelines, and medical education. Their collaborative efforts have led to notable advancements such as expanded financial support programs, public awareness campaigns, and improved healthcare policies. However, challenges such as funding limitations and regulatory hurdles persist. Therefore, strengthening domestic and international partnerships and establishing long-term frameworks for cooperation are crucial in the future. Effective collaboration among stakeholders is essential to advance research, improve healthcare access, and improve the quality of life for patients with rare neurological diseases. |
| Key Words:
Rare neurological disorders, Multiple sclerosis, Advocacy, Patient organization, Medical association, Partnership |
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