From Regional Patient Advocate Jørn Schultz-Boysen
We are still working on bringing together the Regional Medical Advisory Panel for the region. Some doctors are on board, and for some countries, we are waiting for a confirmation of who should join. The first round of dialogue has already been ongoing. Still, it will be great to get the next countries on board to get the whole region activated in this activity and benefit from the great experience from all the involved persons.
Similarly, feedback from the Regional Advisory Groups is also starting to come in, which is excellent. This will enable us to benefit from the experience of the local organizations in the region and also use the ideas present for HAEi.
In my region, HAE TrackR has been made available in two more languages over the past period. It is now also ready in French and Finnish, adding to German, Norwegian, Swedish, and Danish. A huge thank you to the people in the Member Organizations who have helped with the translation of the app. As stated before, the HAE TrackR app is easy to use – and a safe way to store your data – 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 have let their members know of the option to use the HAE TrackR app as well – this is really great! And again, a kind reminder for everyone that the HAE TrackR app is available in many languages, ready for you to use – and to make your everyday with storing your HAE treatments a lot easier. As with any other tool, you need to try it and get used to it, and we are certain that you will see the benefit once you do that.
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 and Austria are planning the first physical meetings since the coronavirus outbreak. It will be exciting to meet again!
Finland is planning several online activities over the coming months. A lot of interesting information will be shared with the participants.
Norway, Sweden and Denmark are still leveraging from the patient meeting held in November 2021. At the same time, several exciting projects are about to kick-off, not least to benefit the younger part of the community. Also, local patient meetings are being planned.
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.
