희귀 신경계질환 극복을 위한 전문가 단체와 환자 단체와의 협력
Collaboration between Medical Association and Patient Organizations to Overcome Rare Neurological Disorders
  • Ki Hoon Kim
  • Young Nam Kwon
  • Jun-Soon Kim
  • Sooyoung Kim
  • Seung Woo Kim
  • ... Eunbin Cho
  • 외 8명
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초록

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.

키워드

Rare neurological disordersMultiple sclerosisAdvocacyPatient organizationMedical associationPartnership
제목
희귀 신경계질환 극복을 위한 전문가 단체와 환자 단체와의 협력
제목 (타언어)
Collaboration between Medical Association and Patient Organizations to Overcome Rare Neurological Disorders
저자
Ki Hoon KimYoung Nam KwonJun-Soon KimSooyoung KimSeung Woo KimKee Hong ParkJin-Sung ParkJeong Bin BongJin Myoung SeokHung Youl SeokHye Lim LeeEunbin ChoByeoung-Jun JeonSeong-il Oh
DOI
10.59578/jmsni.2025.16.1.8-18
발행일
2025-06
유형
Y
저널명
Journal of Multiple Sclerosis and Neuroimmunology
16
1
페이지
8 ~ 18