No matter where people with HAE gather in large groups – for example, at national or international meetings and conferences – there is joy of getting together with HAE friends old and new.

This was also the case when HAE Scandinavia held their combined 2021 Scandinavian Conference and its 20th anniversary in mid-November. The conference took place in a beautiful and very convenient setting at the Clarion Hotel Copenhagen Airport. The joy of meeting was both visible and audible – and it was made even greater by the fact that it was the first time the Scandinavian HAE community could assemble after a long period of corona restrictions. More than 125 Scandinavians seized this amazing opportunity to meet again.

After a word of welcome from HAE Scandinavia President Henrik Balle Boysen, the first guest on the podium was Anthony J. Castaldo, President and CEO of HAEi. Under the heading “HAE – a Global Perspective”, he gave a comprehensive update on the development of recent years and said, among other things: “We now have multiple modern medication options, and more are coming. There are currently eight HAE medicines approved worldwide, and five companies are underway with gene therapy options while others are developing next-generation treatments.”

Despite the many treatment advances, Anthony J. Castaldo stressed the need for active patient organizations as it “is essential for preserving current and future access to medication”. He stated that “nothing is more powerful than patient advocacy”. At the same time, Anthony J. Castaldo called for even a well-established organization such as HAE Scandinavia to continue to find more people and build strength in numbers: “Much has been gained, but we should take nothing for granted”.

Prof. Markus Magerl from Charité – Universitätsmedizin Berlin, Germany, also linked to the conference theme “The Power of Prophylaxis”. He asked, “What is the best drug – who is the winner?” and answered the question himself: “The patient is the winner as there is now a chance to find the right individual drug.” Prof. Magerl pointed out that everybody who wants prophylaxis should have it. In this context, he said that it is crucial that we move from a “12 attacks per year” assessment to a view of the individual with HAE and look at when there is “insufficient disease control”.

Among the other speakers at the conference was Dr. Olav Rogde Gramstad from Oslo University Hospital, Norway, who focused on “How to prepare children and young people with HAE for treatment”, while Dr. Kåre Steinar Tveit from Haukeland University Hospital, Norway, talked about follow-up on HAE patients in his home area of Bergen. Sweden was represented by Dr. Maria Karlsson from Karolinska University Hospital in Stockholm, who talked about HAE and family planning. The HAE patients Nathalie Berne (Sweden), Karina Langsager (Denmark), and Trine Balle Boysen (Denmark) discussed the same topic, not least based on experiences with and considerations about in-vitro fertilization. The participants in the conference also had the opportunity to hear the nurses Tine Skov Andreasen and Karin Pia Henriksen from Odense University Hospital, Denmark, on their experience with preventive treatment.

After a Q&A session with the majority of the participating physicians that mainly focused on how to solve the continued differences in access to therapies in the three Scandinavian countries, breakout sessions followed with a particular focus on Denmark, Norway, Sweden, and the HAE youngsters.

The full academic program ended with a conversation between Prof. Anette Bygum from Denmark and HAE Scandinavia President Henrik Balle Boysen, who have both been involved in the organization since its inception 20 years ago.

Of course, there were also breaks in the program, where the participants had ample opportunity to talk to each other. These breaks also provided an occasion to visit the exhibits of the sponsoring pharmaceutical companies and to visit HAEi’s stand, where HAE TrackR was promoted. Here conference attendees were introduced to how easy it is to download and use this new app from HAEi. HAE TrackR was unveiled from the stage, and many conference attendees chose to install the app and started using it immediately.