行动中的倡导：国际患者组织改善亚太地区遗传性血管性水肿的诊断与护理
Advocacy in Action: International Patient Group Improves Hereditary Angioedema Diagnosis and Care Across the Asia-Pacific.
作者信息
Wong Jane C Y, Tsui Cheryl C W, Lao Kristie C W, Abong Jovilia, Ali Adli, Bhattarai Dharmagat, Hide Michihiro, Jindal Ankur, Jordan Anthony, Kang Hye-Ryun, Katelaris Constance H, Suratannon Narissara, Tan Sze-Chin, Lim Yong-Hao, Corcoran Deborah, Wardman Fiona, Boysen Henrik Balle, Castaldo Anthony J, Li Philip H
机构信息
Division of Rheumatology and Clinical Immunology, Department of Medicine, Queen Mary Hospital, The University of Hong Kong, Hong Kong, China.
University Medical Center and College of Medicine, De La Salle Medical and Health Sciences Institute, Dasmariñas, Cavite, Philippines.
出版信息
Clin Exp Allergy. 2025 Jan 12;55(8):742-4. doi: 10.1111/cea.14623.
This study demonstrates that patient advocacy groups significantly enhance medication availability and improve diagnosis of hereditary angioedema (HAE), particularly in emerging economies within the Asia-Pacific region. This study supports integrating patient advocacy group involvement into management guidelines, emphasising their role in improving access to diagnostics and treatment for HAE.
本研究表明，患者倡导组织显著提高了遗传性血管性水肿（HAE）的药物可及性，并改善了其诊断，尤其是在亚太地区的新兴经济体中。本研究支持将患者倡导组织的参与纳入管理指南，强调其在改善HAE诊断和治疗可及性方面的作用。
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