7-8 October 2017 the combined 4th HAE National Conference and the 2nd HAEi Central and Eastern Europe Workshop took place at the Westin Warsaw Hotel in Warsaw, Poland. This is a report from the HAEi Regional Patient Advocate Michal Rutkowski:
The organizers – HAEi and the Polish Association of Angioedema Patients’ Aid (with a Polish name that in English translates to ‘Swelling Beautifully’) – put lots of efforts in bringing the meeting to the next level and provide to all the attendees an exceptional program with the latest news from the HAE world. The event was organized under the auspices of the Jagiellonian University, the third oldest university inEuropee, and Professor Tomasz Grodzicki, MD, Ph.D., Vice-chancellor of the Jagiellonian University, was the honorary chairman of the organizing committee.
The two days of conference gathered over 140 participants from 12 countries, particularly those from Central and Eastern Europe: Belarus, the Czech Republic, Hungary, Kazakhstan, Poland, Russia, Slovakia, and Ukraine.
The most recent edition of this undoubtedly important meeting attracted the world-class scientists and physicians Professor Henriette Farkas from the Hungarian HAE Center at Semmelweis University in Budapest, Professor Marco Cicardi from the University Hospital L. Sacco in Milan, Professor Markus Magerl from the Charité University in Berlin, and Professor Marc Riedl from the US HAEA Angioedema Center at the University of California San Diego. Additional presenters included Professor Krystyna Obtulowicz and in Stobiecki, MD from the National HAE Center at Jagiellonian University in Krakow, Anthony J. Castaldo and Henrik Balle Boysen, respectively the President and the Executive Director of HAEi, and myself as Vice President of HAEi and Regional Patient Advocate for Central and Eastern Europe.
The program was full of updated information regarding improvements within HAE, current and future treatment options, recommended therapies, children prophylaxis, and the latest WAO HAE World guidelines. If this was not enough, the HAE patients’ community supported participating physicians by organizing a closed breakout session carried out by Professor Cicardi.
However, the most powerful session was a short country presentation, where each CEE country shared the current situation of HAE patients, areas to be improved, and obstacles to be overcome. Mutual empowerment, advocacy, and support is key to any success, so it is in the global HAE family. Volha Puhach from Belarus, Camelia Isaac from the Czech Republic, Arianna Kitzinger from Hungary, Sergey Morozov from Kazakhstan, Denis Sosinskiy from Russia, Michaela Bednarova from Slovakia, Olena Mykal from Ukraine, and myself on behalf of the Polish HAE Association were the patients’ leaders and CEE representatives that introduced the outstanding presentations with many positives and challenges. Most of all the presentations included much inspiration and subsequent motivation for providing our community a better quality of life.
Please have a look at the official video from the HAE National Conference & HAEi CEE Workshop 2017 at https://youtu.be/7Yx3Pv8YcP0.
- Countries in total: 12 (Belarus, the Czech Republic, Denmark, Germany, Hungary, Italy, Kazakhstan, Poland, Russia, Slovakia, Ukraine, and USA)
- Attendance: HAE patient 72 %, Healthcare Professionals 22 %, Other 6 %
- Country presentations: 8
- World-class scientists and physicians: 4
- Evaluation: 100 % of the patients rated the conference as extremely useful – and 100 % of the patients stated that they would attend the conference in the future