From Regional Patient Advocate Jørn Schultz-Boysen
The primary objective for the last three months was the 2022 HAEi Global Leadership Workshop in Frankfurt, Germany. September with the preparations, October with the actual workshop, and then the follow-up. The workshop itself was a very successful event – not only for HAEi but certainly also for the participants. Meeting people from the HAE Community from all around the globe for the first time in more than four years was genuinely unique. Meeting again, reconnecting, and sharing ideas and thoughts – I believe everyone took so many good ideas, input, and, not least, motivation home with them. I know for sure I did.
The workshop offered time to network, meet with the region I represent, hear the latest updates from the healthcare professionals and from HAEi, and meeting with our friends from the industry. All three “components” vital for the great collaboration in the HAE Community.
After the workshop, it is now crucial for all of us to remember the many good stories, the tools and services, and all the input given and select the next steps to take. Whether this is considering hosting the website via HAEi’s platform, building your member database via HAEi Connect as a secure, GDPR-compliant solution, or adapting HAEi Advocacy Academy. Maybe you would like to translate the new “Understanding HAE” patient guide giving precise and relevant information about HAE and leaving space for you to include information about your national organization as well – and to be used as a digital and/or printed tool. The benefits of HAE Companion and HAE TrackR are obvious – two apps that truly offer a clear advantage for all HAE patients and caregivers, whether it is when traveling or taking control of your HAE. Or it might be to involve youngsters from your country in the LEAP program introduced at the workshop.
The above mentioned are just some of the tools presented and discussed at the workshop – all great tools either to help the operation of an organization or to help patients and caregivers directly in their daily life.
Together with the renewed motivation gained at the Global Leadership Workshop, many things are still going on, also in my region.
We are still working on putting together our Regional Medical Advisory Panel for the region. Several participants are 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 are looking 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 organizations and to use the ideas in the tools and services provided by HAEi.
As mentioned, 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, and 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! And soon, a new release will be ready.
The HAE Companion app deserves another mention. It is available in both Apple App store and Google Play, and truly is a great tool. This app will help you find local HAE treatment centers and directions hereto, as well as you will find emergency cards available in more than 80 countries. You can download an 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 you are traveling to a country to have the emergency cards ready in the local languages. Or to have the emergency card in your own language available on your smartphone when being at home.
Sweden recently hosted two patient meetings, one in Malmö in October and one in Stockholm in November. Both with a fantastic show up from patients, caregivers, healthcare professionals, and industry. In December, Norway hosted a similar meeting in Bergen.
Norway, Sweden, and Denmark – united in HAE Scandinavia – are working on exciting projects for kids and youngsters. Soon a series of podcasts about being young with HAE will be launched as the recording has taken place, as has a series of podcasts in Switzerland about HAE.
As mentioned, the major priority during the last three months was undoubtedly the Global Leadership Workshop. It was an excellent opportunity to learn more about the advances within the research of HAE, what is new on the horizon, and what to be aware of. Also, it was such a great opportunity to be able to present all the tools, services and programs that HAEi can offer all the Member Organizations. Both tools, services and programs that many Member Organizations already know and utilize daily and completely new announcements that will bring collaboration and advocacy to a new level. For me personally, to see all the people again was unbelievable. For the first time since COVID-19 shut down the world, we could get so many people together. I dare say I am not alone in that feeling. It was clear that both during the program sessions and the dinners, people really enjoyed being “Together Again”. Onwards to the next gathering, it will be exciting to see all again – and hopefully also many new patients and caregivers.
