News from South Eastern Europe
From Regional Patient Advocate Natasa Angjeleska
2025 highlights
HAEi RPAs support our region’s countries and Member Organizations (MOs) in many ways, and it is always hard to select a few highlights. For 2025, I share these grouped around four key themes of my work.
Expansion and completion of key HAEi educational resources in local languages
“Understanding HAE” and “Women with HAE” were translated, approved, and published in multiple SEE languages (Albanian, Bulgarian, Croatian, Slovenian, Greek, Macedonian, Montenegrin, Turkish, Romanian) and are now actively used for education, advocacy, and awareness, with a long-term capacity-building impact.
High-impact involvement at the 2025 HAEi Regional Conference EMEA
I had an active role in preparing, moderating, and co-facilitating various sessions and panels. Working with my MOs, we ensured strong SEE participation at the conference, strengthening patient and physician engagement, visibility, and regional representation. Representatives from the SEE region participated as panelists, and their activities were presented as good practices, thereby contributing directly to the quality of content, the empowerment of participants, and the reinforcement of advocacy and community cohesion across the region.
Participation in national country meetings
I participated in patient and physician meetings in Croatia and Türkiye, where face-to-face engagement provided valuable opportunities to meet new patients and clinicians and share data from the 2024 HAEi State of Management survey. This highlights the impact of access to modern treatments on quality of life, giving the patient a voice in the physician-expert meeting.
Regional response and coordination protecting treatment continuity
Coordinating meetings with MOs, physicians, and pharma across multiple countries and enabling joint advocacy actions, patient and physician letters, and exploration of alternative access models, protecting treatment continuity for vulnerable countries.
Hopes and goals for 2026
Looking ahead to 2026, these are the hopes and priorities that will guide my work:
- Access to treatment – I want to continue supporting advocacy and awareness in countries where patients remain underserved, work together with MOs, physicians, and partners to improve access to both on-demand and preventive treatment options, so that no patient is left without care.
- Advocacy – I hope to further strengthen MOs by supporting good governance, leadership development, and advocacy skills. My aim is to help MOs become confident, credible partners in access discussions, while also supporting continuity, accountability, and long-term sustainability.
- Education – I want to continue expanding the availability and use of HAEi educational resources in the languages spoken across the SEE region. These materials serve as a foundation for awareness, early diagnosis, and advocacy, especially in countries where reliable information in the local language remains limited.