Friday evening poster session

The Scientific Track of the 2025 HAEi Regional Conference EMEA opened with the customary short oral talks from selected posters. These talks covered a wide range of topics related to the treatment and care of people with HAE, with each presenter given 2 minutes to explain their scientific work concisely.

Posters with short oral talks

Impact of delayed treatment

The first to present was Alexis Bocquet from France, who showcased research on the impact of delayed treatment of HAE attacks. His research was conducted among people in 4 European countries. The study found that delaying treatment led to more severe attacks, and the impairment of quality of life was greater. He suggested that the delay may be due to difficulty in recognizing an attack and a desire to reserve treatment for more severe attacks.

Genetics of HAE in Ukraine

Speaking next was Anastasiia Bondarenko from Ukraine, who talked through their data on the genetic characteristics of HAE in Ukraine. She told the assembled healthcare professionals that their work has tested 25 patients from 15 families in Ukraine. Of these people, 14 had a mutation of the SERPING1 gene. And even in this small group of patients, they found a mutation that occurred in two independent families, and one patient with a confirmed mutation of the Factor XII gene.

Results of an expanded access program for berotralstat

Paola Triggianese, from a hospital in Rome, Italy, spoke about the results of an Italian expanded-access program on berotralstat for the prevention of HAE attacks. They showed that the proportion of patients who were attack-free following treatment with berotralstat significantly improved at 3 and 6 months. Additionally, the patient’s quality of life improved.

Hereditary angioedema in Sub Saharan Africa

Priya Bowry from Kenya spoke to the audience about the landscape for HAE in sub-Saharan Africa. She indicated that data on the situation for people with HAE in the region is severely lacking. They asked physicians to indicate the number of diagnosed patients and the available tests and treatments. She concluded that there is a significant problem with underdiagnosis of HAE in the region and limited information and knowledge about the condition. She called upon those present to assist in access to trials.

Transient hepatitis after danazol discontinuation in HAE

Mats de Lange from the Netherlands presented data on what happened to HAE patients who stopped taking danazol, after seeing a patient treated with the drug suffer a transient form of hepatitis. In this study, they showed that shortly after stopping danazol, all five patients surveyed had significant changes in their liver enzymes; however, none had hepatitis or liver failure, and all liver enzymes normalized within 17 weeks without any treatment. He concluded that awareness of the potential impact of discontinuing danazol is important for physicians and may lead to changes in how patients are transitioned off the drug onto newer therapies.

Long-term safety and efficacy of deucrictibant

Anna Valerieva from Bulgaria presented some of the results from the RAPIDe-2 extension clinical trial, which investigated how well deucrictibant worked to treat HAE attacks. She indicated that they now have data from 465 attacks, which show an initial improvement within 1.1 hours and total resolution of an attack within 10.6 hours.

Tackling unmet needs in HAE

Patrick Yong from the United Kingdom presented research on addressing unmet needs in HAE and optimizing care and treatment. He explained that the authors produced a policy paper calling on the UK government and policymakers to change how things are run to improve access to modern HAE therapies. This included more flexibility in the eligibility criteria and a focus on improving the UK healthcare system for people with rare diseases.

Unfortunately, Dr Gunel and Ass Prof Guilarte were unable to give the short talks with their posters. Global Perspectives caught up with them to ask about their work.

The prevalence of C1 inhibitor antibodies in acquired angioedema according to etiology

Nur Selvi Gunel from Türkiye shared research on the diagnosis of acquired angioedema (AAE). The data presented concerns the use of a form of laboratory test (indirect ELISA (Enzyme-Linked Immunosorbent Assay)) to identify antibodies that could be present in a blood sample. The findings suggest that this antibody-testing method can provide valuable information and may enhance diagnostic accuracy.

Efficacy and safety of donidalorsen for hereditary angioedema among patients in Europe: A regional subanalysis of the Phase 3 OASIS-HAE study

Ass Prof Mar Guilarte from Spain shared two different works at the 2025 HAEi Regional Conference EMEA. In the first, the focus was on analyzing patients treated with a potential new medicine for HAE, called donidalorsen. The findings indicate that the medicine significantly reduced HAE attacks, improved overall quality of life, and had an acceptable safety profile. The research concluded that this demonstrated that donidalorsen could be used for HAE in Europe.

Clinical simulation improves HCP confidence in managing patients with HAE

The second work, Ass Prof Guilarte told Global Perspectives, demonstrated the potential value of an HAE-related simulation to improve healthcare professionals’ knowledge and confidence in managing HAE. The findings from a post-workshop survey indicated that participating HCPs reported that the workshop, called HAE360, improved their knowledge and confidence and led to adjustments in their clinical practice.