Unmet needs in hereditary angioedema: an international survey of physicians

Buttgereit T. Aulenbacher F. Adatia A. Ayala C.V. Al-Nesf M.A. Altrichter S. Abuzakouk M. Al-Ahmad M. Ali R.M. Berardi A. Boccon-Gibod I. Bouillet L. Brussino L. Barešić M. Busse P.J. Betschel S.D. Chong-Neto H. Llosa O.C. Craig T.J. Dorr A.D. Junior S.D.D. Fomina D. Farkas H. Fok J.S. Grumach A.S. Greve J. Guilarte M. Gonçalo M. Grivcheva-Panovska V. Hide M. Hakl R. Jindal A. Katelaris C.H. Kamaleswaran S. Kinaciyan T. Latysheva E. Sousa J.I.L. Bellfill R.L. Mobayed H. Metz M. Nasr I. Mitrevska N.T. Nicola S. Parisi C.A.S. Porebski G. Peter J. Ferriani M.P.L. Filho N.R. Şekerel B.E. Serpa F.S. Stobiecki M. Trainotti S. Valerieva A. Wongsa C. Wong J.C.Y. Yucel E. Li Y. Nenci C. Maurer M. Magerl M. Li P.H.
December 2025 BioMed Central Ltd

Orphanet Journal of Rare Diseases
2025 #20 Issue 1

Background: Hereditary angioedema (HAE) is a rare and potentially life-threatening genetic disorder characterized by unpredictable attacks of angioedema. MENTALIST (UnMEt Needs in herediTAry angioedema—a gLobal physIcian perSpecTive) is the first international survey uncovering unmet needs and identifying barriers to optimal management in HAE following the latest update of the World Allergy Organization (WAO)/European Academy of Allergy and Clinical Immunology (EAACI) HAE guidelines. Methods: This web-based survey comprised 24 questions on HAE management and unmet needs. HAE-expert physicians from the Angioedema Centers of Reference and Excellence network ranked unmet needs according to their own perspectives and their patients’ perspectives, using a 10-point Likert scale ranging from 0 (not a challenge/unmet need at all) to 10 (huge challenge/unmet need). Results: Of 64 respondents from 32 countries, most (91%) had > 5 years of experience in managing HAE. Overall, 48% of respondents (n = 31/64) reported that < 50% of their patients had achieved the WAO/EAACI HAE treatment goals of total disease control and “normalization” of life at the time of the survey. Implementation of consensus recommendations was found to be inconsistent across regions. Gaps in non–HAE-expert physician knowledge, treatment costs, and reimbursement for long-term prophylaxis were the highest-priority challenges according to the respondents. Burden of disease remains a challenge among patients, as reported by their physicians. Conclusions: The MENTALIST findings highlight a need for removal of barriers to HAE treatment goals and propose a call to action to improve access to treatments, for greater provision of education for physicians and patients, critical collaboration with patient organizations and industry stakeholders and ultimately to optimize HAE care.

Guidelines , Hereditary angioedema , Management , Treatment goals , Unmet needs

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Dermatology and Allergy, Institute of Allergology, Charité–Universitätsmedizin Berlin, Freie Universität Berlin and Humboldt-Universität Zu Berlin, Hindenburgdamm 27, Berlin, 12203, Germany
Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Immunology and Allergology, Berlin, Germany
Division of Pulmonary Medicine, Department of Medicine, University of Alberta, Edmonton, AB, Canada
Allergy and Immunology Division, Department of Medicine, Hamad Medical Corporation, Doha, Qatar
Department of Dermatology and Venereology, Kepler University Hospital, Linz, Austria
Center for Medical Research, Johannes Kepler Universität Linz, Linz, Austria
Cleveland Clinic, Cleveland, OH, United States
Respiratory Institute, Cleveland Clinic Abu Dhabi, Abu Dhabi, United Arab Emirates
Department of Microbiology, College of Medicine, Kuwait University, Kuwait City, Kuwait
Instituto de Asma, Alergia y Enfermedades Respiratorias, GA²LEN UCARE Urticaria Centers of Reference and Excellence, GA²LEN ACARE Angioedema Centers of Reference and Excellence, Corrientes, Argentina
French National Reference Center for Angioedema (CREAK) and ACARE, Internal Medicine Department, Grenoble Alpes University Hospital (CHUGA), Grenoble, France
Grenoble Alpes University, T-RAIG Unit, CNRS, UMR 5525, TIMC, French National Reference Center for Angioedema (CREAK), Internal Medicine Department, Grenoble Alpes University Hospital, Grenoble, France
Immunology and Allergy Department, AO Ordine Mauriziano, Department of Medical Science, University of Turin, Turin, Italy
Division of Clinical Immunology and Rheumatology, Department of Internal Medicine, School of Medicine, University Hospital Center Zagreb, Zagreb, Croatia
Division of Clinical Immunology, Department of Medicine, Mount Sinai, New York, NY, United States
Division of Clinical Immunology and Allergy, Department of Medicine, University of Toronto, Toronto, ON, Canada
Department of Pediatrics, Federal University of Paraná, Curitiba, Brazil
ACARE Center Clínica, SANNA El Golf, Lima, Peru
Vinmec International Hospital, Hanoi, Times City, Viet Nam
Department of Clinical Immunology, Barts Health NHS Trust, London, United Kingdom
Serviço de Imunologia, Hospital Universitário Clementino Fraga Filho (HUCFF-UFRJ), Rio de Janeiro, Brazil
Moscow City Clinical and Research Center of Allergology and Immunology, City Clinical Hospital 52, Moscow, Russian Federation
GA²LEN UCARE and ACARE Center, Department of Clinical Immunology and Allergology, I.M. Sechenov First Moscow State Medical University (Sechenov University), Moscow, Russian Federation
Department of Pulmonology, Astana Medical University, Astana, Kazakhstan
Hungarian Angioedema Center of Reference and Excellence, Department of Internal Medicine and Haematology, Semmelweis University, Budapest, Hungary
Department of Respiratory Medicine, Box Hill Hospital, Melbourne, Australia
Monash Lung, Sleep, Allergy/Immunology, Monash Medical Centre, Melbourne, Australia
Eastern Health Clinical School, Monash University, Melbourne, Australia
Clinical Immunology, Faculty of Medicine, Centro Universitario FMABC, Santo Andre, Brazil
Department of Otorhinolaryngology, Head and Neck Surgery, Ulm University Medical Center, Ulm, Germany
Department of Allergy, Angioedema Reference Center (CSUR), Hospital Universitari Vall d’Hebron, Institut de Recerca Vall d’Hebron (VHIR), Barcelona, Spain
Dermatology Department, University Hospital, Coimbra Local Health Unit and Faculty of Medicine, University of Coimbra, Coimbra, Portugal
University Clinic of Dermatology, School of Medicine, University St. Cyril and Methodius, Skopje, North Macedonia
Department of Dermatology, Hiroshima City Hiroshima Citizens Hospital, Hiroshima, Japan
Department of Dermatology, Hiroshima University Hospital, Hiroshima, Japan
Department of Clinical Immunology and Allergology, St. Anne’s University Hospital Brno, Brno, Czech Republic
Faculty of Medicine, Masaryk University, Brno, Czech Republic
Allergy Immunology Unit, Department of Pediatrics, Advanced Pediatrics Centre, Post Graduate Institute of Medical Education and Research, Chandigarh, India
Immunology & Allergy Unit, Department of Medicine, Campbelltown Hospital and Western Sydney University, Sydney, Australia
Dermatology and Allergy Center, Odense Universitetshospital, Svendborg Sygehus, Nyborg Sygehus, Denmark
Department of Dermatology, Medical University of Vienna, Vienna, Austria
Immunopathology Department, NRC Institute of Immunology FMBA Russia, Pirogov Russian National Research Medical University, Moscow, Russian Federation
Allergy Department, Clínica San Felipe, Lima, Peru
Allergology Department, Hospital Universitari de Bellvitge, Institut de Recerca IDIBELL L’Hospitalet de Llobregat, Barcelona, Spain
Adult Immunology and Allergy Unit, Royal Hospital, Muscat, Oman
Department of Dermatology, Re-Medika Hospital, Skopje, North Macedonia
Secciones de Alergia Adultos y Pediátrica, Hospital Italiano de Buenos Aires, Buenos Aires, Argentina
Department of Clinical and Environmental Allergology, Jagiellonian University Medical College, Krakow, Poland
Division of Allergy and Clinical Immunology, Department of Medicine, University of Cape Town, Cape Town, South Africa
Allergy and Immunology Unit, University of Cape Town Lung Institute, Cape Town, South Africa
Department of Medicine, Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto, Brazil
Faculty of Medicine, Pediatric Allergy and Asthma Division, Hacettepe University, Ankara, Turkey
Asthma, Allergy and Immunology Service, Escola Superior de Ciências da Santa Casa de Misericórdia de Vitória, Espírito Santo, Brazil
TUM School of Medicine and Health, Department of Otorhinolaryngology, Head and Neck Surgery, TUM University Hospital, Munich, Germany
Department of Allergology, Medical University of Sofia, University Hospital Alexandrovska, Sofia, Bulgaria
Division of Allergy and Clinical Immunology, Department of Medicine, Faculty of Medicine Siriraj Hospital, Mahidol University, Bangkok, Thailand
Division of Rheumatology and Clinical Immunology, Department of Medicine, Queen Mary Hospital, Hong Kong
Istanbul Faculty of Medicine, Department of Pediatric Allergy and Immunology, Istanbul University, Istanbul, Turkey
Cerrahpasa Faculty of Medicine, Department of Pediatric Allergy and Immunology, Istanbul University Cerrahpasa, Istanbul, Turkey
CSL Behring, King of Prussia, PA, United States
CSL Behring LLC, Bern, Switzerland
Division of Rheumatology and Clinical Immunology, Department of Medicine, The University of Hong Kong, Hong Kong

Dermatology and Allergy
Fraunhofer Institute for Translational Medicine and Pharmacology ITMP
Division of Pulmonary Medicine
Allergy and Immunology Division
Department of Dermatology and Venereology
Center for Medical Research
Cleveland Clinic
Respiratory Institute
Department of Microbiology
Instituto de Asma
French National Reference Center for Angioedema (CREAK) and ACARE
Grenoble Alpes University
Immunology and Allergy Department
Division of Clinical Immunology and Rheumatology
Division of Clinical Immunology
Division of Clinical Immunology and Allergy
Department of Pediatrics
ACARE Center Clínica
Vinmec International Hospital
Department of Clinical Immunology
Serviço de Imunologia
Moscow City Clinical and Research Center of Allergology and Immunology
GA²LEN UCARE and ACARE Center
Department of Pulmonology
Hungarian Angioedema Center of Reference and Excellence
Department of Respiratory Medicine
Monash Lung
Eastern Health Clinical School
Clinical Immunology
Department of Otorhinolaryngology
Department of Allergy
Dermatology Department
University Clinic of Dermatology
Department of Dermatology
Department of Dermatology
Department of Clinical Immunology and Allergology
Faculty of Medicine
Allergy Immunology Unit
Immunology & Allergy Unit
Dermatology and Allergy Center
Department of Dermatology
Immunopathology Department
Allergy Department
Allergology Department
Adult Immunology and Allergy Unit
Department of Dermatology
Secciones de Alergia Adultos y Pediátrica
Department of Clinical and Environmental Allergology
Division of Allergy and Clinical Immunology
Allergy and Immunology Unit
Department of Medicine
Faculty of Medicine
Asthma
TUM School of Medicine and Health
Department of Allergology
Division of Allergy and Clinical Immunology
Division of Rheumatology and Clinical Immunology
Istanbul Faculty of Medicine
Cerrahpasa Faculty of Medicine
CSL Behring
CSL Behring LLC
Division of Rheumatology and Clinical Immunology

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