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<p>Hereditary angioedema (HAE) is a rare, chronic disorder that requires coordinated, multidisciplinary care extending beyond acute attack management. Drawing on the successful comprehensive care framework established in Hemophilia Treatment Centers, this manuscript proposes a structured model for HAE care that emphasizes centralized care coordination, multidisciplinary teams, emergency preparedness, patient and caregiver education, psychosocial support, equitable access to emerging therapies, and integrated research and advocacy. By adapting lessons learned from hemophilia care, the proposed model aims to improve patient outcomes, empower individuals living with HAE, and provide a roadmap for implementing standardized, patient-centered care in rare disease management.</p>

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Comprehensive care for hereditary angioedema: lessons learned from HAEmophilia Treatment Centers

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年5月13日

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  • Kelsey Uminski,
  • Dawn Goodyear

摘要

Hereditary angioedema (HAE) is a rare, chronic disorder that requires coordinated, multidisciplinary care extending beyond acute attack management. Drawing on the successful comprehensive care framework established in Hemophilia Treatment Centers, this manuscript proposes a structured model for HAE care that emphasizes centralized care coordination, multidisciplinary teams, emergency preparedness, patient and caregiver education, psychosocial support, equitable access to emerging therapies, and integrated research and advocacy. By adapting lessons learned from hemophilia care, the proposed model aims to improve patient outcomes, empower individuals living with HAE, and provide a roadmap for implementing standardized, patient-centered care in rare disease management.