News from South Eastern Europe

From Regional Patient Advocate Natasa Angjeleska

Although my work in the South Eastern Europe (SEE) region over the past three months was mainly focused on the 2025 HAEi Regional Conference EMEA, I also had the opportunity to provide support in sharing information with physicians about the possibilities of participating in a couple of webinars through the ACARE network. The level-up webinars offer the opportunity to gain up-to-date knowledge about various treatment options for HAE, as well as updates from ongoing clinical studies.

The newly announced HAEi LEAP 2026 program is an exciting opportunity for youngsters (and their Member Organizations). I’ve shared the call for applications with the countries in my region. This is another possibility to support future HAE advocates who can bring new, fresh ideas and initiatives to MOs. I truly hope to have participants from SEE in the class of 2026.

Another focus in this period was expanding the languages in which the ‘Understanding HAE’ guide is available. We already have versions for 7 languages spoken in the SEE countries, and are working on translations in Macedonian and Bulgarian. These booklets are expected to be available soon in both web and printed versions. The translation of ‘Women with HAE’ into Bulgarian is also finalized and ready to be added to the already available 4 languages spoken in SEE countries. These booklets are recognized as excellent resources providing collated information for HAE. They are easy to understand for the public, decision-makers, and stakeholders who come into contact with HAE patients for the first time. The guides support these readers with basic information as a starting point to understand this rare disease.

I am happy that the third picture book for ‘The Rare Boy on the race: I swell, but you cannot tell’ was translated into the Czech language. We hope it will provide more options for reading and educating younger generations about the opportunities available to HAE patients, enabling them to enjoy life despite the disease, and instill compassion, kindness, and inclusivity among the younger generation.

There was an opportunity to meet with the new Regional Medical Advisory Panel (RMAP) member for Montenegro, Dr Nikola Delevic. Also at the meeting were Dr Lidija Pocek and patient lead Marija Kalugjerovic, and we discussed future steps to improve treatment options for patients in Montenegro and explored different ways for collaboration in the SEE region and beyond.