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Original

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]

Consensus paper

Expert consensus on the long-term use of lanadelumab in hereditary angioedema: Toward harmonized care

Emel Aygören-Pürsün, Jens Greve, Inmaculada Martinez-Saguer, Susanne Trainotti, Mathias Sulk, Bettina Wedi, Ellen Witte-Händel, and Markus Magerl

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Volume 10 (2026) p. 86 - 97

Abstract

Allergologie select, Vol. 10/2026 (86-97)

Expert consensus on the long-term use of lanadelumab in hereditary angioedema: Toward harmonized care

Emel Aygören-Pürsün¹, Jens Greve², Inmaculada Martinez-Saguer³, Susanne Trainotti⁴, Mathias Sulk⁵, Bettina Wedi⁶, Ellen Witte-Händel⁷,⁸, and Markus Magerl⁷,⁹

¹University Hospital Frankfurt, Goethe University, Frankfurt, ²Department of Otorhinolaryngology, Head and Neck Surgery, Ulm University Medical Center, Ulm, ³Haemophilia Centre Rhine Main, Frankfurt/Main, ⁴Technical University of Munich, TUM School of Medicine and Health, Department of Otorhinolaryngology, Head and Neck Surgery, TUM University Hospital, Munich, ⁵Department of Dermatology, University of Münster, Münster, ⁶Department of Dermatology and Allergy, Comprehensive Allergy Center, Hannover Medical School, Hannover, ⁷Angioedema Center of Reference and Excellence (ACARE), Institute of Allergology, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, ⁸Global Allergy and Asthma Excellence Network, ACARE/UCARE coordinating office, and ⁹Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Immunology and Allergology, Berlin, Germany
Background: Hereditary angioedema (HAE) is a rare, potentially life-threatening disease caused in most cases by C1 inhibitor deficiency. Lanadelumab, a monoclonal antibody targeting plasma kallikrein, is an effective long-term prophylactic (LTP) treatment for HAE. However, consensus on best practices remains lacking. Objectives: This study aimed to report consensus statements on key principles on long-term lanadelumab therapy for HAE in Germany developed at an HAE LTP Expert Meeting in the year 2024 in Frankfurt, Germany. Materials and methods: A multidisciplinary panel of seven German HAE experts participated in a consensus process to align current guidelines with real-world clinical practice. Following literature review and debate, keynotes were drafted, refined, and voted on. Consensus was defined as ≥ 70% agreement. Key domains included: shared decision-making; flexibility in initiating or adjusting prophylaxis; structured patient education; self-administration; individualized dosing; emergency medication availability; and proactive follow-up, including specific guidance for women of childbearing age. Results: Ten core consensus statements were developed, achieving unanimous (100%, n = 9/10 statements) or strong (≥ 85%, n = 1/10 statements) agreement. It is recommended that the decision to initiate long-term prophylaxis be made through shared decision-making and that the decision made can and should be adjusted again in the further course of treatment. It is advisable to train patients in the technique of self-injection and to start therapy with lanadelumab with a 2-week injection interval in accordance with the product information. The injection interval should be adjusted to the individual patient, and all well-controlled patients should be offered the option of extending the interval without compromising the goal of complete disease control. Even and especially when the prophylaxis is well tolerated, emergency medication must not be neglected. Conclusion: These consensus statements provide a practical, expert-endorsed framework for implementing lanadelumab LTP in clinical practice emphasizing individualized treatment aligned with international guidelines and patient needs.Correspondence to:
Markus Magerl, MD, Charité – Universitätsmedizin Berlin, Institute of Allergology, Hindenburgdamm 27, 12203 Berlin, Germany
Email: [email protected]

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