News from Central Eastern Europe and Middle East

From Regional Patient Advocate Michal Rutkowski

Dear HAEi Friends,

The months of July, August, and September were exceptionally active, with a strong focus on preparations for the 2025 HAEi Regional Conference EMEA. Nevertheless, there were also non-conference-related activities that I would like to share with you.

Throughout this quarter, I maintained close contact with the majority of the Member Organizations (MOs) under my responsibility. Expanding and promoting the use of HAEi Tools and Resources remained a top priority.

I held virtual meetings with MOs from the Middle East: HAE Iran, HAE Lebanon, HAE Qatar, HAE Oman, HAE Saudi Arabia, HAE UAE, and from Central and Eastern Europe: HAE Armenia, HAE Georgia, HAE Hungary, HAE Kazakhstan, HAE Latvia, HAE Russia, and HAE Ukraine. These one-to-one communications and follow-up calls served as an essential platform for exchanging updates, addressing local advocacy priorities, and offering practical support to implementing HAEi resources. They also provided insight into each country’s progress and highlighted areas for further collaboration.

Resource development advanced during these months, in part supported by the Monthly Resource Focus. The ‘Understanding HAE’ guide was finalized in Georgian. Another HAEi booklet, ‘Women with HAE’, was completed in Russian, with versions in Georgian and Persian underway. In addition, the children’s book ‘The Rare Boy on a Race’ was translated into Czech, expanding HAEi’s resources for young patients and their families. With HAE Oman, we have initiated the website development process. In Poland, I have been actively involved in preparations for a patient conference, which will further strengthen the patient community in my home country.

HAEi’s Principles for Good Governance document was distributed and discussed with MOs, encouraging organizations to align their operations with HAEi’s best practices in leadership and transparency. As we look forward to 2026, I have conducted a round of communication with my MOs to inquire about their readiness to participate in the 2026 Global Angioedema Leadership Conference in Madrid, scheduled for 26-29 March next year. I have also initiated discussions with specific MOs regarding educational events for 2026. More details will follow soon.

The past three months have shown how collective action, resource sharing, and open communication can transform the MOs and patient experience. Every new translation, every tool implemented, and every conversation held represents another step toward ensuring that people living with HAE in Central Eastern Europe and the Middle East have access to the knowledge, support, and care they deserve.