From President Michal Rutkowski, HAE Poland (Swelling Beautifully Association):

The period of April and May 2019 has been extremely busy for the Polish HAE Patients’ Organization with providing educational projects for HAE national community and attending in numerous important events.

With the on-going project called “HAE Regional Workshops” Swelling Beautifully visited and organized another two amazing meetings, this time in the city of Bialystok on 13 April, and in the city of Krakow on 18 May, with the participation of 61 attendees.

The workshop in the Bialystok became an international project with the attendance of patients from Belarus. Similarity of the language and mostly mutual respect and motivation shared among the patients is the key to the ultimate goal, which is the reimbursement for modern HAE therapies. HAE Poland and HAE Belarus have shared a long history of collaboration that hopefully will result in access to medication for the Belarusian HAE patients.

Additionally, the Krakow’s meeting was about to celebrate hae day :-) 2019! This year’s edition of the workshop has exceeded our wildest expectations, both in terms of the number of attendees, as well as the content of the program that perfectly meets patients’ needs and expectations. In the survey conducted by HAE Poland among the participants of the Workshops, 99 percent of the patients rated the workshops as very good or excellent. Taking this opportunity, we would like to thank all participants, especially patients and their relatives, whose emotions and gratitude are the greatest reward for us.

Despite all the successes with educational projects over the years, there is still huge room for improvement in the area of patients’ advocacy, awareness, education and guidelines. And that is an extra motivation for the Swelling Beautifully team to keep going for the better future and benefits of HAE patients.

The next HAE Regional Workshop was held 8 June 2019 in the city of Wroclaw, where a large number of participants took part.

On 22-23 May 2019 Swelling Beautifully attended the International Workshop on Surveillance and Screening of Blood-borne Pathogens organized by the International Plasma and Fractionation Association. Just after that – on 23-26 May 2019 – we visited Budapest, Hungary to participate in the 11th edition of C1-INH Workshop organized by Henriette Farkas and Lilian Varga.

All the news and latest information regarding Swelling Beautifully can be found at www.piekniepuchne.org and www.haerw.org.