Normalisation of Life in Hereditary Angioedema: Optimising Outcomes and Individualised Management

Hereditary angioedema (HAE) is a rare genetic condition that causes unpredictable, recurrent episodes of swelling, particularly affecting the limbs, face, gastrointestinal tract, and airways. Episodes can be debilitating or even life-threatening if not managed properly. Beyond the physical burden, HAE profoundly impacts quality of life, leading to pain, anxiety, and significant social and occupational limitations. Many patients face constant fear of the next attack and feelings of isolation. Treatment guidelines focus on normalising patients’ lives by controlling symptoms and reducing attack frequency and severity, aiming to help patients fully participate in daily activities without fear. A BioCryst-sponsored symposium took place at the 14ᵗʰ C1-inhibitor Deficiency and Angioedema Workshop in Budapest, Hungary. The symposium was chaired by Henriette Farkas, Professor of Internal Medicine and Director of the Hungarian Angioedema Reference Center, Department of Internal Medicine, Semmelweis University, Budapest, Hungary. The panellists discussed what the goal of normalisation of patients’ lives means in real-world practice. Marc Riedl, Professor of Medicine, Division of Allergy and Immunology, University of California, San Diego, USA, spoke on the burden of illness of HAE, exploring unmet needs and the importance of a comprehensive assessment to enhance care for adults with HAE. Andrea Zanichelli, Head of Angioedema Centre, IRCCS Policlinico San Donato, Milan, Italy, explored key considerations for switching HAE treatments in adults to optimise outcomes. Tamar Kinaciyan, Head of Allergy and Paediatric Dermatology Clinics, Department of Dermatology, Medical University of Vienna, Austria, discussed practical considerations for individualised HAE management approaches in adolescents to support life normalisation.