After an amazing and successful hae day :-) with lots of activities from HAE patients, caregivers, health care professionals and industry, it continues to be wonderful reading about all the countries that participated on haei.org. The information about the countries, from past to present and looking ahead towards the next ten years is both educating and entertaining reading.
While the hae day :-) has taken a lot of time and focus, many other things have been prioritized. We are continuing to gather the Regional Medical Advisory Panel with some doctors already in place – I look very much forward to finalizing the work and learning from all the experience gathered amongst the people in the panel.
The HAE TrackR app has been launched and is now available in many languages, amongst others in German, Norwegian, Swedish, and Danish. We are looking forward to having the app ready in Finnish as well – and hopefully, Icelandic will follow. The app is easy to use – and safe to store your data in – and it will help patients and physicians in their dialogue on current and future treatment options. I can only urge everyone to check it out and to start using it. The member organizations are letting their members know of the option to use the HAE TrackR app as well – this is really great.
Germany has released several podcasts on everyday issues, challenges, and opportunities when living with HAE. This is very interesting and valuable to listen to and to learn from.
On 2 September 2021, the patient organization in Switzerland celebrated its 20th anniversary. Huge congratulations to everyone involved in realizing the first two decades, and all the best for the years to come. Although a physical meeting, unfortunately, has not been possible due to the Coronavirus, I am sure the big day was marked in many homes around Switzerland.
The number of ACARE centers continues to grow, and the 7th ACARE center in Germany, the Department of Dermatology at the University of Erlangen, has just been added. Furthermore, there are now two centers in Austria, The Department of Dermatology at the Medical University of Vienna, and the Kepler Universitätsklinikum, Universitätsklinik für Dermatologie und Venerologie in Linz.
During the weekend of 12-14 November 2021, HAE Scandinavia – covering Norway, Sweden, and Denmark – will host its 4th conference, this time in Copenhagen, Denmark. This conference will at the same time mark the 20th anniversary of the Scandinavian organization. The conference’s theme is “The Power of Prophylaxis”, focusing on the value of having the option of prophylactic treatment in Scandinavia.
It is also very exciting that we are in contact with the University Hospital in Reykjavik, Iceland, about a new patient guide to be used for Icelandic patients.