From HAE Poland

Celebrating 20 years: “A season of education and empowerment”, Regional HAE Conferences by “Swelling Beautifully”.
Over the past months, the Polish HAE Patient Association “Swelling Beautifully” has taken meaningful steps to strengthen the hereditary angioedema (HAE) community through a series of regional conferences designed to inform, support, connect, and celebrate its 20th anniversary. These gatherings were more than informational sessions; they became safe spaces for patients and families to share experiences, deepen their understanding of the disease, and find strength in a community that truly understands the daily realities of living with hereditary angioedema.

The series began in Warsaw in March, and it was covered in the previous edition of Global Perspectives magazine. The second regional conference, held on June 7, 2025, in Kraków, demonstrated the growing momentum behind this movement. The event welcomed nearly 90 participants from five southern Polish voivodeships: Lower Silesia, Opole, Silesia, Lesser Poland, and Subcarpathia. Themed “Without Boundaries,” the conference addressed both clinical care and personal empowerment. It placed a strong emphasis on self-management and hands-on learning, including self-administration.

The Conference in Kraków brought together a distinguished panel of experts whose insights gave the audience not only knowledge but confidence:

• Michał Rutkowski, President of the “Swelling Beautifully” Association, delivered an in-depth presentation on the evolution of patient care over the past 20 years. His historical perspective reminded the audience how far the field has come, and how much remains to be improved.
• Dr Marcin Sobiecki, from the HAE National Centre in Krakow, reviewed current on-demand and preventative treatments’ availability and reimbursement rules.
• Dr Robert Pawłowicz, from HAE Regional Centre in Wrocław, presented ongoing clinical trials in HAE, emphasizing the importance of patient participation in research and a bright future for further development in HAE drug discovery.
• Prof Ewa Cichocka-Jarosz from the Children’s University Hospital (USD) in Kraków focused on the clinical symptoms and their manifestation observed in children and adolescents with HAE. She presented the diagnostic pathway for these patients at the USD hospital, along with case studies of a group of patients under her care.
• Dr Anna Dzieża-Grudnik, from HAE National Centre in Kraków, provided an update on treatment strategies for children and pregnant women with HAE, the most vulnerable patient groups.
• Dominika Słodka, “Swelling Beautifully” Regional Patient Advocate and coordinator of the youth group, emphasized the power of patient engagement and how a supportive community can truly transform lives. She shared examples of various youth-led projects and encouraged participants to involve children with HAE and their siblings in multiple events to be organized by both HAE Poland and HAEi.

Adding an international dimension to the event, our special guest was Fiona Wardman, HAEi Executive Vice President Global Advocacy and Chief Advocacy Officer, who talked about how our global non-profit network of Member Organizations empowers local patient groups to advocate for better future, and what resources HAEi offers to its’ members, so they can effectively advocate for access to and reimbursement of lifesaving therapies.

While expert talks anchored the conference in scientific rigor, it was the stories shared in the Patient Panel Discussion and between the sessions that truly captured the spirit of the event. Many patients expressed that it was their first time meeting someone else with HAE. That sense of recognition, of finally being seen and heard, was as valuable as any clinical update.

By choosing to bring their conferences directly to the regions, the HAE Poland is actively dismantling one of the biggest barriers in rare disease care: access, and attracts more patients. These regional events, therefore, do more than inform; they deliver care where it’s needed, making patients feel seen, included, and empowered in their own hometowns.

Looking ahead, the “Swelling Beautifully” plans to continue this series, ensuring that no matter where someone lives in Poland, they will have the opportunity to connect with experts, learn about the latest treatments, and most importantly, meet others who share their journey. The next and last regional conference of 2025 will be held on 18 October in the city of Poznań in the Higher Poland voivodeship.