From HAE Ukraine

This spring, our association carried out a series of events.

From April 1 to May 31, we joined the flash mob organized by haeday.org, adding our own activities.

We translated the brochure “Women with HAE”, which is published on the website of the international organization and is available for reading here.

HAE specialists conducted educational seminars in April and May to raise awareness among doctors and medical professionals across all regions of Ukraine.
The patient association, with the support of “Takeda”, the Polish “Healthcare Education Institute”, and the technical organizer “Medical Internet Systems”, held the Second All-Ukrainian Scientific and Practical Conference on HAE – “Understanding HAE to Improve Quality of Life” – with the participation of expert doctors from the Central, Western, and Southern regions.

The conference took place on May 16–18 in the city of Truskavets, with 72 participants.

Our beloved experienced doctors – Liudmyla Zabrodska, Anastasiia Bondarenko, Tetiana Bondarenko, Khrystyna Lishchuk-Yakymovych, and Liudmyla Samoilenko – made this meeting rich, valuable, and unforgettable.

The program included introductions of new association members, speeches by the president of the HAE association, Nataliia Formaniuk, and board members Mariia Matkivska, Liudmyla Mekhed, and a representative of the public organization for primary immunodeficiencies – Oksana Strielnykova.

An important step was the joint creation of a patient guide about the disease and an action plan for seeking medical care.

In the form of an interactive role-play, volunteers participated and tried themselves in the role of patient rights defenders at a doctor’s appointment. They practiced safe injection techniques and discussed important questions regarding the disease.

For the first time, a separate program for children was developed, which included an educational lesson on HAE presented by speakers and quizzes with prizes.

Educators and animators worked with the children, additionally, leading physical exercises, competitions, games, dancing and singing, drawing, and filling the atmosphere with joyful emotions!

The conference and events allowed patients and their families to share experiences and receive emotional support.

Speakers’ presentations contributed to a better understanding of HAE, emphasized the importance of screening family members, keeping diaries, and accessing prophylactic treatment where possible.

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Together, we can make life for people with HAE better and safer.