From Natalia Formaniuk, HAE Ukraine
At the invitation of the HAEi and ACARE organizations, a group of doctors — Khrystyna Lishchuk-Yakymovych, Mariana Derkach — and representatives of the Ukrainian HAE patient association — Natalia Formaniuk, Olena Mykal, Mariya Matkivska, Svitlana Svinarska, and Liudmyla Mekhed — took part in the 2026 Global Angioedema Leadership Conference in Madrid, Spain, 26-29 March, which brought together around 800 participants to “Make a difference.”
Olena Mykal represented the Ukrainian patient association during the panel discussion “Good Practice Principles” – guidance for panelists, where she shared the organization’s experience in building transparent and effective governance within the patient community. The discussion focused on the importance of good governance principles for strong patient organizations, including transparency, trust, accountability, and sustainable organizational development. Special attention was given to the opportunities that strong governance structures can create for patient associations, as well as practical advice for emerging organizations on establishing effective management and governance from the very beginning.
Doctors and researchers worked in separate thematic groups, which allowed for a deeper exploration of the key aspects of the disease. During the conference, the latest developments in the field of treatment were presented, including modern molecules for replacement therapy. Special attention was given to more convenient forms of medication: oral tablets, subcutaneous injections, and intravenous administration. Some of these medications have already completed Phase II–III clinical trials, opening the prospect of their availability in Ukraine in the near future.
Particular emphasis was placed on the importance of early genetic diagnosis, which makes it possible to avoid misdiagnosis and prevent complications. It was also highlighted that prophylactic therapy significantly improves patients’ quality of life.
An important part of the event was the analysis of real clinical cases: the path patients take toward receiving a diagnosis, common difficulties, and typical mistakes were discussed. In the format of open discussions, patients had the opportunity to ask doctors questions, discuss effective approaches to disease control, and explore possibilities for improving quality of life.
We are reminded that hereditary angioedema (HAE) is a rare disease characterized by recurrent, unpredictable episodes of swelling that significantly affect daily life.
Among the main triggering factors are:
- stress
- injuries
- surgical interventions
- medical procedures
The disease is often mistaken for other conditions, including allergic reactions, appendicitis, or gynecological pathologies (especially in cases of abdominal swelling), which complicates timely diagnosis.
In the absence of replacement therapy medication, the disease may have fatal consequences. Currently, there are 178 diagnosed patients in Ukraine, while based on prevalence, there should be around 800. At present, state-funded access to human C1 inhibitor medication is available; however, there is still insufficient provision for prophylactic therapy. The possibility of co-financing through local budgets is being considered. We hope that our patients will receive sufficient access to replacement therapy in adequate quantities.
We congratulate HAEi LEAP 2026 student Liza from Ukraine on the successful start of the 14-week online training program and participation in the three-day in-person seminar held in Copenhagen, Denmark, on April 23–25. We wish her success in implementing the project and organizing an event for young people!
This year, to spread awareness about HAE, we are also preparing for the event for the hae day:), and are actively participating in the flash mob in purple together with the whole world.
