Hello HAE Friends,
We are excited to share some key updates from our recent advocacy activities in Poland!
At the end of Q2, HAE Poland (also known as the Swelling Beautifully Association) took part in several expert meetings, including discussions with representatives from the Ministry of Health, to advocate for the most pressing needs of Polish patients diagnosed with HAE. Key issues included ensuring access to long-term prophylaxis with subcutaneous C1-INH esterase for pregnant HAE patients and expanding the reimbursement criteria for preventive treatment with lanadelumab under the drug program. While both issues are highly complex, we are hopeful that, with the collective support of the entire local HAE community, we can secure reimbursement for these essential therapies. We kept working on the above in Q3; however, the goal hasn’t been achieved yet.
At the start of the summer, the Swelling Beautifully Association hosted the 2024 Youngsters Summer Workshop, marking the second edition of this event. This initiative continues the original project from the HAEi LEAP Class of 2023, led by Dominika Słodka, a member of the HAEi Youngsters Advisory Group and a Regional Patient Advocate for HAE Poland.
The 3-day workshop brought together 40 participants, including young patients, caregivers, and healthcare professionals. To enhance the program, Debs Corcoran, coach for the HAEi LEAP Educational Program, led the workshop, providing invaluable guidance. Debs empowered and motivated the young attendees and their families, addressing various aspects of patient advocacy in a well-structured and impactful way.
During the workshop, Debs shared insights on time management – a vital skill that can help youngsters live more fulfilling lives while reducing stress, which can be a trigger for HAE attacks. She also led a session on advocacy, emphasizing that each of us is an advocate, and highlighted the importance of advocacy for those living with HAE. The youngsters actively participated, sharing their ideas and compiling a list of qualities that define the “ideal advocate.”
Additionally, the participants collaborated to create guidelines for using social media to raise awareness about HAE. They discussed the role of social media in today’s world and brainstormed ideas for content to post on Instagram. Remember, by sharing our experiences and knowledge, we can create more meaningful content for social platforms.
The summer workshop also provided an excellent opportunity to connect with expert physicians Dr. Marcin Stobiecki and Dr. Anna Dzieża-Grudnik. They helped the young patients deepen their understanding of HAE and provided a safe space to ask questions that may have previously felt uncomfortable or taboo. To build their advocacy skills, the youngsters even conducted interviews with the clinicians.
The event concluded with an essential self-administration course, ensuring that every youngster with HAE, as well as their family members, feels confident in administering their treatment – whether intravenously or subcutaneously. This life-saving skill is vital for managing HAE independently.
All the insights, knowledge, and guidelines gathered during the workshop will be used to prepare the second edition of the Polish Youngsters Magazine!
Be sure to check out the following video from our 2024 HAE Poland Youngsters Summer Workshop: https://youtu.be/YUleYY-OzXc
In addition to the summer workshop, from October 3-6, 2024, the HAE Poland Leadership team attended the 2024 Global Leadership Workshop in Copenhagen, Denmark. This incredible event brought together over 750 HAE stakeholders, including patient leaders, healthcare professionals, and industry representatives from 90 countries, with 16 attendees from Poland.
Our Polish delegation took an active role in many sessions, making the most of this unique opportunity to network with other HAE advocates and expert physicians who participated in the ACARE Global Angioedema Forum 2024.
Michał Rutkowski, Vice President of HAEi, Director of the HAEi Regional Patient Advocate Program, and President of HAE Poland, played an important role in the advocacy sessions, while Dominika Słodka was responsible for engaging young participants.
HAE Poland regularly shares updates on our social media channels, keeping you informed about the Association’s latest activities and ongoing projects. We warmly invite you to follow us and stay connected!
