From Regional Patient Advocate Jørn Schultz-Boysen
In Denmark, three patient meetings were held in June. It was great to meet with patients and caregivers again, and good information about HAE was shared. Norway and Sweden are planning three patient meetings – two in Sweden and one in Norway – to be held before the end of the year.. The three countries are working on exciting projects for kids and youngsters – soon, a series of podcasts about being young with HAE will be recorded.
A new HAEi patient guide is now ready and was officially launched at the 2022 HAEi Global Leadership Workshop. It is available in English and can be translated by the Member Organizations to local languages.
We are still working on putting together the Regional Medical Advisory Panel. We have several participants confirmed, and they are already feeding in very valuable information and ideas. Other countries have not yet been able to appoint a member of the panel. We look forward to continuing the dialogue with the panel to benefit even more from the collaboration.
Similarly, feedback from the Regional Advisory Groups has come in from many of the countries in the region. This will enable us to benefit from the experience of the local organizations in the region and to use the ideas in the tools and services provided by HAEi.
HAE TrackR continues to be a great tool and is now available in 30 languages – several of which are spoken in my region (Danish, Finnish, French, German, Norwegian, Swedish). 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 to start using it!
The HAE Companion app, available on both Apple App store and Google Play, is a great tool to use when traveling. This app will help you find local HAE treatment centers and directions hereto, as well as you will find the Emergency Cards available in 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 is having the Emergency Cards ready in the local languages. Or to have the card in your own language available on your smartphone when at home.
