News from South Eastern Europe

From Regional Patient Advocate Natasa Angjeleska

2025 started with good news for patients in two countries in South Eastern Europe! HAE Albania secured its first access to HAE preventative treatment for two patients (to begin with, we hope), and HAE Kosovo secured patient access to acute HAE treatment for the first time.

As RPA, I supported both countries in their advocacy efforts to access treatment. Specifically for HAE Albania, I assisted in their intensive advocacy activity through the end of 2024. HAEi provided a Letter of support that was sent to the Ministry of Health pointing to the importance of access to modern acute and preventive treatment for HAE patients based on the WAO/EAACI Guideline for the Management of Hereditary Angioedema, as well as the role of MOs in decision making regarding the needs of patients.

I shared data and the presentation from the State of Management in SEE with countries, and having comparable data and information helped different countries in their advocacy efforts with the regulatory and decision-making bodies regarding access to treatment.

I maintained regular communication with pharmaceutical representatives and distributors in different countries, and this was also important in recognizing the need for different therapies in different countries.

The start of a new year offers a natural moment to pause and take stock. I used this moment to remind all MOs in the SEE region about the opportunities to use different resources developed by HAEi.

As a result, HAE Greece started using HAEi Connect, and HAE Turkiye involved other members in maintaining their larger group of patients and caregivers in HAE Connect.

HAE Greece translated the Understanding HAE booklet into Greek. This resource will benefit people in Greece and Cyprus as both countries use the same language.

Other countries have started the translation process with both Understanding HAE and Women with HAE currently being translated into Macedonian, Bulgarian, Serbian, Albanian, Romanian, and Turkish. Both booklets will serve in the awareness and educational activities implemented by MOs.

All MOs are very excited about the upcoming 2025 HAEi Regional Conference EMEA, and I will be encouraging and supporting the registration of patients, caregivers, and physicians from all countries in SEE. The conference provides us with another opportunity to meet in person and discuss new initiatives and plans for action to improve the quality of life of people with HAE and their families. I plan a bigger focus on motivating more youngsters from the region to participate in the specific conference Youngsters Track – watch this space!