From Regional Patient Advocate Jørn Schultz-Boysen
Over the past months, the main focus has been the 2023 HAEi Regional Conference EMEA in Munich, Germany, 1-3 September 2023. You can read a lot more about the conference and the impact it has made amongst patients, caregivers, healthcare professionals, and representatives from the pharmaceutical companies in this edition of Global Perspectives.
Participants from all over the region were in Munich – Finland, Norway, Sweden, Denmark, Israel, Austria, Switzerland, and Germany – and in all three tracks – patient/caregivers, youngsters, and the scientific track. All countries had prepared a short presentation and an important message to share with everyone at the conference. These messages were presented and read out in the patient/caregiver track with the statements from all the other countries. This was a powerful moment with all Member Organizations represented.
Apart from the many inspirational presentations at the conference, it was great to feel the connection between participants, and the networking during breaks was massive. It was time to meet new and “old” friends and catch up with the latest from the pharma companies supporting the conference. At the same time, seeing so many youngsters participate in their particular track was wonderful. It’s great to see so many young people who are the future for HAE.
At the conference, it was a pleasure to announce that the Pharmaco and Socioeconomic study has now been launched in Germany and Switzerland for all patients and caregivers to respond to. It will soon also be open in Austria. We hope that as many of you as possible will take your time to answer the survey. The HAE organizations in Germany and Switzerland will contact you about this (and soon Austria as well) – and those in Munich received a one-pager describing the study.
Our friends from Switzerland have produced an excellent short film explaining HAE in simple terms. It is explained in non-medical language and covers what triggers the disease, how the processes in the body work, and what can be done about it. The movie is spoken in Swiss-German and is subtitled in English, German, French, and Italian – see the film here.
In Scandinavia, a youngster completed the HAEi LEAP 2023 program, and the project being worked on together with the local Member Organization is developing an app for patients and caregivers. The app will sum up the content provided to the community in the Scandinavian countries and focus on not only the illness but also the tools available to all to make daily life with HAE easier. It will be available in the languages spoken in the Nordic countries, which offers great potential for other Member Organizations to use the app’s content.
Also, I am very happy to say there is interest in HAEi hosted websites from two countries in the region – Finland and Austria. Hopefully, we will soon get started on these two websites.
As always, a shout-out to the two apps offered by HAEi. HAE TrackR, the app that enables people with HAE to take control of their HAE by registering acute and prophylactic treatments, and HAE Companion, the pocket-size travel partner app. Both are highly recommended and available in Apple’s App Store and Google Play.
HAE TrackR is a great tool now available in 36 languages – several spoken in ”my” region (Danish, Finnish, French, German, Norwegian, and Swedish). The HAE TrackR app is easy to use and it will help the patient and physician in their dialogue on current and future treatment options.
The HAE Companion app deserves another mention. This app will help you find local HAE treatment centers, directions to find them, and Emergency Cards available in more than 80 countries.
But nothing beats meeting in person. A big thank you to all who traveled to Munich to participate in the 2023 HAEi Regional Conference EMEA. It was wonderful to meet you all and to experience this special conference with all of you. I can’t wait to see you next time again!
