From Michal Rutkowski, HAE Poland
A season of connection and networking: HAE Poland (also known as the Swelling Beautifully Association) at the 2025 Regional Conference EMEA and the final country conference in Poznań.
This year has been one of remarkable growth, visibility, and empowerment for the Polish HAE community. As part of its commitment to building a strong and inclusive patient network, the Swelling Beautifully Association not only brought together local communities across Poland but also made its mark on the international stage.
In October 2025, 23 representatives from the organization traveled to Rome, Italy to participate in the 2025 HAEi Regional Conference EMEA, a flagship event for the HAEi patient community from Europe, the Middle East, and Africa. With delegates from approximately 65 countries, the conference provided a unique platform for patients, caregivers, healthcare professionals, and advocates to share experiences, knowledge, and strategies for improving HAE care in the region.
For many of our members, this was not just a professional experience, but a deeply personal one. Standing shoulder to shoulder with other patients and caregivers, sharing best practices, and learning from global experts reinforced what we’ve long known: the power of community transcends borders.
Back at home, that same spirit of empowerment found its culmination in the city of Poznań, a week after the EMEA Conference, where we held the final local HAE event of 2025, and what a finale it was.
With over 110 participants from across western and northern Poland, the Poznań event brought together patients, families, and physicians for a truly meaningful day of education and connection. The conference welcomed distinguished guests and experts, including Dr Aldona Juchacz, Dr Małgorzata Sokołowska, and Dr Marcin Stobiecki, who brought deep clinical insight and a passion for patient-centered care. Their presentations covered both the medical and emotional aspects of managing HAE, including clinical research, pregnancy and children, latest advances in HAE therapies, and the current state of reimbursement for modern HAE treatment options in Poland.
However, what made this conference truly unforgettable were the stories shared by the patients themselves. From first-time speakers to long-time community members, these personal testimonies offered raw, heartfelt glimpses into life with HAE: the fear of uncertainty, the isolation, the unexpected strength found in others walking the same path, the power of patient advocacy, and significant changes with access to and reimbursement for on-demand and preventative therapies. Several attendees described the event as ‘life-changing’, not just because of what they learned, but because they felt seen, heard, and understood, sometimes for the very first time. Conversations flowed long after the final panel ended, with many patients exchanging contact information, planning local meetups, and expressing a renewed sense of hope and solidarity.
This year’s three local conferences held an even deeper meaning, as 2025 marks the 20th anniversary of HAE Poland’s registration and the 22nd anniversary of starting HAE patient advocacy on Polish soil. Each meeting became not only an opportunity for learning and support but also a heartfelt celebration of over two decades of community building, advocacy, and resilience. Looking back on twenty-plus years of dedication to the HAE community, every shared story, every handshake, and every new connection felt like a living tribute to how far we have come together since Prof. Krystyna Obtułowicz (the godmother of ‘Polish HAE’) diagnosed the first Polish HAE patient back in February 1981.
By choosing to bring local conferences directly to the regions, the Swelling Beautifully Association continues to break down the barriers that so often define rare disease care: distance, isolation, and lack of access. The Poznań conference wasn’t just the last stop on a tour; it was a celebration of everything we’ve built together and a reminder of the road ahead. It wouldn’t be possible to organize a single event without the dedicated team of extraordinary HAE advocates and human beings: Dominika, Estera, Sonia, Jakub, Piotr, and Sebastian. Their passion, expertise, knowledge, perseverance, and never-give-up attitude are the foundations of HAE Poland’s mission.
