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Achieving a normal life in hereditary angioedema: Quality of life and treatment gaps among German HAE patients

Markus Magerl, Thomas Buttgereit, Inmaculada Martinez-Saguer, Petra Staubach-Renz, Jens Greve, Emel Aygören-Pürsün, Lucia Schauf, and Kathrin Schön

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Volume 10 (2026) p. 1 - 10

Abstract

Allergologie select, Vol. 10/2026 (1-10)

Achieving a normal life in hereditary angioedema: Quality of life and treatment gaps among German HAE patients

Markus Magerl¹,², Thomas Buttgereit¹,², Inmaculada Martinez-Saguer³, Petra Staubach-Renz⁴, Jens Greve⁵, Emel Aygören-Pürsün⁶, Lucia Schauf⁷, and Kathrin Schön¹,²,⁷

¹Institute of Allergology, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, ²Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Immunology and Allergology, Berlin, ³HZRM Haemophilia Center Rhein Main, Frankfurt am Main, ⁴University Medical Center, Mainz, ⁵Department of Otorhinolaryngology, Head and Neck Surgery, Ulm University Medical Center, Ulm, ⁶University Hospital Frankfurt, Department for Children and Adolescents, Frankfurt, and ⁷HAE Vereinigung e.V., Germany
Background: Hereditary angioedema (HAE) is a rare genetic disease characterized by recurrent swelling attacks. Current guidelines for HAE management emphasize achieving complete disease control to normalize patients’ lives. Quality of life (QoL) differences between patients with 0 attacks and those with persistent attacks remain to be explored. Materials and methods: The German patient organization for individuals affected by hereditary angioedema, HAE Vereinigung e.V. conducted an online survey with 122 HAE patients in Germany in 2024. Participants were categorized according to their therapy – long-term prophylaxis (LTP) or on-demand therapy (ODT) – and according to their attack frequency over the last 6 months. Patient-reported outcomes for functional, emotional, and social impacts were analyzed to evaluate QoL. Results: Although 83% of patients expressed satisfaction with their treatment, 59% of patients still had attacks. Patients on LTP reported significantly fewer attacks (p < 0.001) and higher QoL compared to those on ODT (p < 0.001). Patients with 0 attacks consistently showed significantly better outcomes across all QoL domains than those with 1 or more attacks (p < 0.001). Conclusion: The findings highlight that even minimal residual disease activity can meaningfully reduce QoL. Achieving complete attack freedom, rather than partial control, is necessary to restore normalcy for patients with HAE. Hence, regular adjustments of the HAE management plans based on patient-reported outcomes are crucial to ensure that treatment strategies address both medical and QoL needs.Correspondence to:
Thomas Buttgereit, MD, Charité – Universitätsmedizin Berlin, Institute of Allergology, Hindenburgdamm 30, 12203 Berlin, Germany
Email: [email protected]

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