Hereditary angioedema (HAE) is a rare disease associated by bradikinin-mediated episodes of edema. Lack of diagnostic tools and treatment options until 2020 led to a small number of diagnosed patients in Ukraine. In 2020 treatment with C1 inhibitor became available to Ukrainian patients at the expense of the state budget.

Purpose is to update the data about HAE diagnostics, treatment and current patient’s needs in Ukraine.The data are based on the reports of clinical immunologists all over Ukraine and the information from the patient organization. To collect social aspects and patient needs a google form questionnaire was distributed among patient organization members.

To date, 131 patients with HAE (104 - type 1, 24 - type 2, 3 - normal C1-inhibitor) have been diagnosed in Ukraine, of which 107 are adults and 24 are children, 62.6% of patients were diagnosed during 2021-2025. Median age іs 37,5 years (range: 6-72) and 61.1% are female. In most patients, the disease manifestated in childhood (average age 10.4 years), while the average age of diagnosis is 26.5 years. 90% of patients have access to on-demand treatment when drug is delivered at home. 62% of patients can self-administer the drug themselves or by their family members. However, only 23% indicated that they inject the C1-inhibitor for each attack, 31.8% strive for this, and 40% use the drug only in case of an abdominal or laryngeal attack. Reasons for not administering drugs include economy of the drug, fear of addiction, avoidance of injury to veins. 72.3% of patients noted a deterioration in the course of the disease after the start of full-scale Russian aggression against Ukraine in an increasing the frequency and/or severity of edema, a third noted that the disease returned to its normal course during the last year, indicating "habituation" to stressful situations associated with the war. 48% of patients receive prophylactic treatment with C1-inhibitor concentrate with varying regularity.

Over the past few years, the diagnosis of HAE has significantly improved in Ukraine, although the actual number is still lower the estimated number about 800 patients. The delay in diagnosis is about 16 years. Availability of treatment and laboratory diagnostics is essential to improve the detection of new patients. Despite significant improvements in access to treatment, adherence remains to be low. The war had a significant impact on the patients with HAE meaning the migration, additional attack triggers and access to medical facilities.