From Regional Patient Advocate Jørn Schultz-Boysen
I am happy to share the great progress and big steps we have been making in the Nordics, DACH (Germany, Austria, Switzerland), and Israel. It is really rewarding to see how our combined efforts are paying off, raising awareness, and offering support to everyone with HAE and their caregivers.
We have so many different activities ongoing, all aimed at making more people aware and knowledgeable about HAE. Social media has been crucial in all these countries, helping people find information and connect with others.
An event I have mentioned previously is from HAE Scandinavia, and the lasting impact of this meeting really emphasizes how important it was. A big moment for HAE Scandinavia was their 5th Scandinavian Conference in Malmoe, Sweden, from 10-12 November 2023. Over 100 people came together, including patients, caregivers, healthcare professionals, and representatives from pharmaceutical companies. Bringing together such a diverse group for talks, discussions, and networking was incredibly valuable. It motivated and educated everyone involved and gave them confidence in dealing with HAE. I hope it will inspire others to organize similar meetings.
In another exciting development, HAE Scandinavia, working with a student from the HAEi LEAP 23 program, launched the SumsUp app.
This app, which started as a LEAP 23 project, is now live and helps patients, caregivers, and others navigate the complexities of HAE. It is a big win, showing the success of the LEAP 23 program and the power of collaboration in bringing helpful tools to our community.
Looking ahead, we are planning patient meetings across the region in 2024, promising a busy year ahead. I am especially looking forward to these gatherings and meeting members of our community.
The Swiss HAE Organization has made a short film that explains HAE in simple terms. Available in Swiss-German with subtitles in several languages, it is an excellent resource for anyone wanting to learn more about HAE. I strongly recommend watching this film: https://bit.ly/hae-simply-explained.
We are also focused on making resources easy to access. For example, Austria and Finland are interested in the free website hosting offered by HAEi, ensuring organizations have a strong online presence.
We are involved in an important study examining the costs and quality of life related to HAE treatments in Germany, Switzerland, and Austria. I urge patients and caregivers in these countries to participate in the survey: https://tinyurl.com/HAEUmfrage. It is open until the end of May 2024, and the responses will help us understand the impact of HAE treatments in these countries.
There is so much going on in our region. The hard work of HAE organizations in creating active communities is amazing. Let’s keep up the engagement, participation, and support for each other.
Finally, I wish everyone a wonderful hae day :-) and look forward to the happiness and togetherness it brings. Together, we are making a real difference in the lives of those affected by HAE, both now and in the future.
