From HAE Poland
Celebrating 20 Years: HAE Poland’s Regional Conferences in 2025
The year 2025 marks a significant milestone for the Swelling Beautifully Association (also known as HAE Poland) as it celebrates the 20th anniversary of its official registration. However, HAE advocacy efforts in Poland began even earlier, 2 years before the organization was formally established. To commemorate this occasion, the Board of Directors opted for a series of 3 regional events instead of a single central gathering, ensuring greater accessibility for patients and broader participation.
The first HAE Regional Conference took place on Saturday, 22 March 2025, in Warsaw, Poland, bringing together nearly 100 participants, including patients, caregivers, healthcare professionals, and industry partners. It was dedicated to patients from the Lubelskie, Łódzkie, Mazowieckie, Podlaskie, Świętokrzyskie, and Warmińsko-Mazurskie voivodeships.
The conference opened with a retrospective on 2 decades of advancements in HAE patient care in Poland, highlighting how advocacy has transformed patients’ lives. A key figure in this progress has been Michał Rutkowski, President of the Swelling Beautifully Association and Vice President of HAE International, whose leadership has played a pivotal role in securing access to and reimbursement for modern HAE treatments, including both on-demand therapies and long-term prophylaxis.
Several HAE expert physicians provided valuable updates:
- Dr Marcin Stobiecki, from HAE National Center in Kraków, reviewed current treatment availability and reimbursement rules, helping patients navigate their options.
- Dr Marcin Kurowski, from HAE Regional Center in Łódź, touched on ongoing clinical trials for potential new medications, emphasizing the importance of patient participation in research.
- Dr Tomasz Matuszewski, from HAE Regional Center in Warsaw, provided a brief update on diagnosis and treatment strategies for children and pregnant women, the most vulnerable patient groups.
Beyond medical advancements, the conference focused on strengthening patient connections. A dedicated storytelling session allowed patients to share personal experiences, creating an emotional and empowering space. These testimonials underscored the transformational impact of modern treatments, showing how individuals once severely affected by HAE can now lead a life comparable to those of healthy individuals thanks to improved access to medication.
Dominika Słodka, the Swelling Beautifully Association’s Regional Patient Advocate and leader of HAE Poland Youngsters’ Community, shared her journey as a member of the HAEi Youngsters Advisory Group. She emphasized the power of patient engagement and introduced youth-led initiatives, including the HAE Poland Youngsters Summer Workshops, which have already seen 2 successful editions.
Additionally, attendees had the chance to learn self-administration techniques through a dedicated training course available throughout the event.
The conference also introduced exciting resources from HAE International. Michał Rutkowski presented HAE TrackR, an extremely useful app that sparked great interest among participants, demonstrating its potential to help patients better track and manage their condition.
The event successfully combined education, advocacy, and community building, reinforcing the Swelling Beautifully Association’s dedication to improving the lives of HAE patients in Poland.
To relive the highlights of the 2025 HAE Poland Regional Conference, please watch the video below the images.
