From Michal Rutkowski, HAE Poland

In late June/early July, HAE Poland (also known as the Swelling Beautifully Association) organized the first-ever HAE Poland Youngsters Summer Workshop. This event was part of Dominika Blacharska’s HAEi LEAP project; Dominika is an HAEi Youngsters Advisory Group member and an HAE Poland Regional Patient Advocate. The project was to empower and motivate young people with HAE to start advocating for themselves and other HAE patients. There were 43 attendees at the 3-day meeting, including 29 youngsters, their chaperones, expert physicians, a nurse, a psychologist, and a famous Polish celebrity!

During the HAE Summer Workshops, psychologist Adrianna Sobol talked to young patients about how to deal with emotions caused by the disease. Remember that you are not alone; it is worth talking, sharing experiences, and supporting each other.

Michał Figurski (a partially paralyzed patient with chronic disease), music journalist, radio and television presenter, and producer shared his story with the participants and spoke about the importance of getting support from loved ones in illness and not giving up and believing in yourself! Thanks to determination and the support of our loved ones, we can achieve anything.

The meeting with HAE specialists Dr. Marcin Stobiecki and Dr. Małgorzata Bulanda gave young patients the opportunity to expand their knowledge about the disease and gave the opportunity to ask questions that may have previously been embarrassing or a taboo topic.

The youngest age group created their own Super-Hero that helps them with HAE. Most of them are parents who are always next to their little patients when they need help. The older group was working on different topics related to HAE. The work they have done will be the spark in our first Polish Youngsters Magazine. We finished the Workshops with a very important course of intravenous and subcutaneous self-administration. We want to make sure that every person feels comfortable with injecting the medicine.

We started September by taking part in the 2023 HAEi Regional Conference EMEA. It was a huge event that gathered 650 HAE patients (including 18 delegates from Poland!), caregivers, physicians/scientists, and industry representatives from 61 countries. All representatives of the HAE Poland took an active part in three parallel sessions: scientific, general for patients, and a session dedicated to young patients aged 12-25. Dominika Blacharska, member of the HAEi Youngsters’ Advisory Group, presented the project: HAE Summer Workshops, organized in cooperation with the Swelling Beautifully Association. Dr. Marcin Stobiecki, a member of the Scientific Committee of the conference, supervised the proper course of the scientific part and was engaged in the Youngsters track, and Michał Rutkowski, President of HAE Poland and Vice-President of HAE International, presented the current situation of patients in Central and Eastern Europe, the Benelux countries and in the Middle East.

October was a very special month for us. We held the 6th National HAE Conference in Krakow. It felt amazing to meet again after a 5-year break since the last Summit organized in 2018.

170 participants, including patients, caregivers, HAE expert physicians, and industry partners of the Swelling Beautifully Association, were celebrating 20 years of activity of the Patient Organization in Poland. Those days were full of great emotions and top-class specialist knowledge. We are left with the incredibly touching patient stories that moved every attendee and the fantastic keynote presentations by HAE expert physicians: Prof. Sandra Christiansen, Prof. Markus Magerl, Dr. Robert Pawłowicz, Dr. Marcin Stobiecki, and Prof. Bruce Zuraw.

Those who have helped HAE Poland spread their wings and began to help local patients with hereditary angioedema effectively also celebrated with us. There would be no successes of the Swelling Beautifully Association if it were not for HAE International, and especially its leadership team: Anthony J. Castaldo, Henrik Balle Boysen, Fiona Wardman, and Jørn Schultz-Boysen.

We are delighted to have the strong bond of patients and their enormous determination to ensure a better future for the next generations of HAE people.

During the Conference, Prof. Markus Magerl from the Charité University Hospital in Berlin presented the benefits and limitations of emergency treatment of HAE attacks and showed the benefits of preventative treatment for HAE people.

Dr. Marcin Stobiecki, from the National HAE Center at the University Hospital in Krakow, presented how, thanks to the current possibilities of effective long-term prevention and acute treatment of HAE attacks, patients can receive effective and individualized therapy. This is possible thanks to cooperation between the physician and the patient, consisting of “shared decision making”. In his presentation, Dr. Stobiecki touched on the topic of ongoing clinical trials in HAE, as well as the criteria for qualifying patients for these trials.

Dr. Robert Pawłowicz from the University Hospital in Wrocław devoted his presentation to reviewing the therapeutic options available and reimbursed in Poland. The details of on-demand treatment, short-term prophylaxis, and long-term prophylaxis were discussed. Moreover, Dr. Pawłowicz emphasized the importance of patient education, as well as the ability of patients to self-administered.

Prof. Sandra Christiansen, from the Central HAE Center at the University of California San Diego (UCSD), presented topics that are close to all of us, family and family planning. Prof. Christiansen raised the issues of prenatal and postnatal diagnostics in a fantastic way and also presented the issues regarding HAE with normal C1 Inhibitor.

Prof. Bruce Zuraw, the Director of the US HAEA Angioedema Center at UCSD, presented a significant increase in interest in HAE over the last 20+ years. He also presented the mechanism of swelling and the most common triggers of a HAE attack. Prof. Zuraw emphasized how important it is to properly diagnose the disease and how important it is for all family members to undergo screening tests. We had the opportunity to hear about modern sequencing methods that help quickly diagnose the disease based on known and new pathogenic mutations and the development of accurate biomarkers.

As previously mentioned, the Polish HAE Youngsters created their first own Youngsters Magazine. It is the fruit of the work of young people during the workshop. There are stories of young people dealing with stress of the disease as well as photos from the workshop. Feel free to check it!

Furthermore, we are happy to announce another implementation of HAEi resource, ‘Understanding HAE’ Patient Guide is now available in Polish.

2H 2023 was extremely intense with making new connections, creating the Youngsters Community, taking part in amazing conferences and advocating for HAE. We can’t wait to see what is coming in 2024!

If you want to see more about our advocacy activities, please take a look at our videos from the 2023 HAE Poland Summit here and from the 2023 HAE Poland Youngsters Workshop here.