From Regional Patient Advocate Jørn Schultz-Boysen
The Regional Medical Advisory Panel (RMAP) is still taking form for the region. While some doctors have already agreed to participate, some countries are still in dialogue. The first dialogue is ongoing for the panelists who have joined, and interesting work and findings are already coming in. I look very much forward to finalizing the work in gathering the RMAP and learning from all the experience accumulated amongst the people on the panel.
Launching the HAE TrackR app has been exciting – and it is available in many languages. For my region, it is already present in German, Norwegian, Swedish and Danish. And two more languages spoken in the region (French and Finnish) are planned to be available soon. The HAE TrackR app is easy to use – and safe to store your data in – and it will help the patient and physician in their dialogue on current and future treatment options. I can only urge everyone to check it out and start using it. The member organizations also let their members know of the opportunity to use the HAE TrackR app – this is really great.
Germany continues to be very active, amongst other things on social media and releasing interesting podcasts regularly. The podcasts cover everyday issues, challenges, and opportunities on living with HAE.
Switzerland has released the 5th newsletter – a very comprehensive and interesting edition covering amongst other items new available medicines, the treatment methods, and a historical walkthrough of the past 20 years with HAE in Switzerland and the Swiss HAE organization.
During the weekend of 12-14 November 2021, HAE Scandinavia, covering Norway, Sweden and Denmark, hosted their 4th Scandinavian conference, this time in Copenhagen, Denmark. At the same time, the conference marked the 20th anniversary of the Scandinavian organization. The theme of the conference was “The Power of Prophylaxis”, focusing on the value of having the option of prophylactic treatment in Scandinavia. It was the first time since corona that patients, caregivers, health care professionals and industry representatives from all over Scandinavia were able to meet. More than 120 people gathered to learn more about the latest treatment options as well as how HAE is handled in the countries. Of course, there was time set aside to network; after all, it was great for people to meet face to face. Also, HAE TrackR was presented and caused a lot of interest amongst the participants. HAE Scandinavia had set up a stand to explain more and help the patients download the app and start using it. It was a great opportunity to speak with the patients about the benefits of the app – and to answer questions about getting started. At the same time, it was a good chance to talk with patients and caregivers about the HAE Companion app.
Work continues on a new HAEi patient guide which will soon be shared with our contact at the University Hospital in Reykjavik, Iceland. This patient guide will also be available for other member organizations to translate for the patients in their countries.
