희귀 신경계질환 극복을 위한 전문가 단체와 환자 단체와의 협력

Abstract

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.