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Comprehensive care for hereditary angioedema: lessons learned from HAEmophilia Treatment Centers
Kelsey Uminski1,2, Dawn Goodyear3,4
1Division of Hematology and Hematological Malignancies, Department of Medicine, Foothills Medical Centre, University of Calgary, 1403 29 St NW, Calgary, AB, T2N 2T9, Canada. kelsey.uminski@ucalgary.ca.
Abstract:
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.
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