From Regional Patient Advocate Jørn Schultz-Boysen
The Regional Medical Advisory Panel (RMAP) for my region is still being put together. Yet another country has found its RMAP, which is great – for other countries, we are waiting for a confirmation on who should join. The first round of dialogue has already been going on. Still, it will be great to get the next countries involved as well to get the whole region activated in this activity, and thus 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 to use the ideas present for HAEi.
The HAE app TrackR continues to be a great tool and is now available in 28 languages – several of which are spoken in the region. TrackR 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!
Approaching the summer period in the region – and a time when many decide to travel – another recommendation is to check out the HAE Companion app in the Apple App Store and Google Play. This app will help you find local HAE treatment centers and directions hereto, as well as you will find the emergency cards available in more than 84 countries. You can download the emergency card in the local language of the country you are visiting to your smartphone, e.g., to Apple’s Wallet and Android’s Passbook. A great help when traveling to a country is to have the emergency cards ready in the local languages. Or to have the emergency card in your language available on your smartphone when at home.
Germany continues to be very active, amongst other things, on social media with posts, podcasts on living with HAE, and many other activities. On 14 May 2022, HAE Germany hosted a virtual hae day :-) patient event to celebrate the awareness day.
HAE Switzerland held its annual patient meeting on 30 April, incidentally the first face-to-face patient meeting after the corona pandemic. A great success which you can read more about later in this magazine. Also, Switzerland has been busy being on air on the TV show “Gesundheit Heute” to mark hae day :-) and to speak more about everyday life with HAE as well as being covered in the magazine “Schweizer Familie” on 19 May. Furthermore, HAE Switzerland celebrated hae day :-) by sending all its members a gift for the awareness day.
HAE Austria celebrated its 15th anniversary and, at the same time, held the first patient meeting after corona. That happened on 30 April 2022. I had the pleasure to join the meeting and meet with both the leadership of HAE Austria, patients and caregivers, and physicians and pharma representatives. It was a very nice meeting with a good mixture of learnings and knowledge exchange as well as a social aspect – it was simply nice to meet people again.
It should also be mentioned that our Regional Medical Advisory Panel representatives from Austria and Switzerland have given great input to important questions, which HAEi is using to further enhance and develop the HAEi Advocacy Academy.
HAE Finland has held several online meetings over the past months. I had the pleasure to present at the meeting taking place on 31 May, where the focus was on some of the patient and caregiver-oriented services HAEi can assist our Member Organizations with – among other things, Global Perspectives, HAE TrackR, HAE Companion, and news about the upcoming Global Leadership Workshop and regional conferences.
In Denmark, three patient meetings are currently ongoing. As with all other meetings, it’s great to get out and meet the patients and their caregivers again. Norway and Sweden are planning two patient meetings in each country, all held in the autumn of 2022. The three countries are working on some exciting projects for kids and youngsters. Furthermore, in HAE Scandinavia, hae day :-) was celebrated by sharing a lovely cake recipe for everyone to get busy baking – it is, of course, important to get some new calories after burning a lot of them during the hae day :-) activities.
A new HAEi patient guide is being developed, and it has now reached a stage where we have been able to share it with our contact at the University Hospital of Reykjavik, Iceland. We are currently looking for ways to translate the “Understanding HAE” guide to Icelandic so our patients, caregivers, and the whole HAE community in Iceland can benefit from it.
