What is it like to live with HAE in Ukraine during times of war?

How does such an extreme situation impact the life of HAE patient families?

To find out the answers, a mixed team of Ukrainian HAE experts & patient representatives (Bondarenko A., Zabrodska L., Formaniuk N.) undertook a patient survey earlier in 2022. The results were summarized in a poster that was presented as part of the Scientific track of the HAEi Global Leadership Workshop, which took place in Frankfurt, 6–9^th Oct. 2022.

The survey aimed to assess “the impact of war on the fate of patients with HAE.” 40 Ukrainian HAE patients participated in the study by filling out an electronic questionnaire prepared by the research team. The key findings indicate that:

• "almost half of the respondents (18/40; 45 %) had to change their place of residence due to the start of the war.
• 11 of them moved to another region of Ukraine, 7 went abroad. Three patients were in the occupied territory. 40% could not answer the question about their future plans, reflecting instability and frustration.
• countries where patients from Ukraine moved: Poland, Germany, Switzerland, Italy, Bulgaria. Everyone wants to come back home either as soon as possible or after the end of the war.
• about 30% of patients had problems with access to treatment due to the war, 73% continue to receive medicine due to the state of Ukraine, only 1 patient receives medicine at the expense of another state, and 23% do not receive medicine at all."

For more details, please access the full poster in English here.

HAE Junior team would like to tHAEnk the research team represented by Bondarenko A., Zabrodska L., Formaniuk N. for granting permission to share the research findings with our patient community.