News from Central Eastern Europe and Middle East
From Regional Patient Advocate Michal Rutkowski
Dear HAE Friends, as we move through 2025, the second quarter has brought significant progress, engagement, and collaboration across the Central Eastern Europe and Middle East regions. Below is an overview of key initiatives and milestones achieved since my last update.
Continuing earlier outreach efforts, I conducted several one-to-one virtual meetings with patient leads and representatives from numerous HAEi Member Countries, including Armenia, the Czech Republic, Georgia, Hungary, Iran, Kazakhstan, Latvia, Lebanon, Lithuania, Oman, Qatar, Russia, Saudi Arabia, Ukraine, and the UAE. These meetings were an invaluable opportunity to share updates on HAEi tools and resources, gather feedback, and address country-specific challenges.
To share insights on a couple of these meetings, the discussions with HAE Armenia focused on upcoming clinical trials, LEAP 2025 preparations, and collaboration with health authorities. With HAE Georgia, I heard about their successful HAE & Anaphylaxis Conference in Tbilisi, which over 100 physicians attended and offered guidance on their planning for the 2026 patient meeting.
Resource localization continues to be a key priority. This quarter, we completed and distributed the “Understanding HAE” patient guide in Armenian and Georgian. Translations of the “Women with HAE” booklet are currently in progress in Hungarian and Latvian. These localized materials play a vital role in increasing awareness and supporting patients at the national level.
The leads for HAE Saudi Arabia and I collaborated on the content for their newly developed, MO-oriented website hosted by HAEi. I’m pleased to share that our efforts have paid off; you can now visit the website at haesaudiarabia.haei.org.
In May and June, the Regional Patient Advocates (RPAs) coordinated the second round of the Regional Medical Advisory Panel (RMAP) questionnaire. I worked with the medical advisors across Central Eastern Europe and the Middle East on this. Access to medicines is a high priority, and we supported pharmaceutical research efforts in identifying potential clinical trial sites and advising on relevant trial details in the region. Additionally, I participated in meetings with various pharmaceutical companies, including a Patient Council meeting hosted by Pharvaris and virtual meetings with Astria Therapeutics, CSL Behring, and Takeda.
In May, as RPA, I was delighted to join HAE Latvia to celebrate hae day :-) during a national virtual patient event. It was an honor to present alongside local physicians, promote stronger advocacy, and introduce HAEi and its global support for MOs. This event led to a closer partnership with the local patient group, and we are now working together on a new website and an advocacy plan for the remainder of the year.
In June, HAE Poland organized a regional HAE conference in Kraków for patients and their families, which gathered nearly 90 participants. It was gratifying to support the organizers in delivering the meeting. It was the second regional conference held in 2025 and the 20th anniversary of HAE Poland, a significant milestone.
The past months have highlighted the strength and diversity of our HAEi community. From localization projects and strategic consultations to regional event planning, our collective efforts continue to help expand access, raise awareness, and empower HAE patients.
I want to thank all Member Organizations for their ongoing collaboration. I look forward to seeing many of you at the 2025 HAEi Regional Conference EMEA in Rome this October!