News from Nordics

From Advocacy Lead Jørn Schultz-Boysen

The part of 2025 has brought positive momentum and strong community engagement across the Nordics region.

In Denmark, the year began with a successful patient meeting in Aarhus on 25 March, which included a compelling presentation at Aarhus University on The Meaningful Brain. I had the opportunity to provide some input on the agenda, including ideas for topics. I will continue this support for the two additional patient meetings scheduled before the end of June — one in Odense and one in Copenhagen — which promises continued connection and support among the Danish HAE community.

In Sweden, I am supporting the organization with planning and preparations for their next patient meeting, which will be held in Stockholm on 10 May. The program will feature a physician presentation and other engaging sessions designed to inform and inspire.

A key part of regional advocacy work is sharing experience and advice with organizations to support dialogue with the relevant authorities. I’m delighted to share that Norway is celebrating a significant milestone: a new HAE medication approval—a meaningful development for Norwegian patients. In addition, Norway will proudly have a young representative participating in the LEAP25 program. This is Norway’s first participation in LEAP, and it was great to share information about the program and answer all their questions about it.

Across the three countries, I am also excited about the newly launched SumsUp app! I’ve supported the organizations with questions and testing, and it’s now available as a native app for both iOS and Android. It provides a trusted digital companion for patients navigating daily life with HAE. You can learn more about it on social media, where we’ve actively promoted it to the community.

Sharing information about HAEi’s resources and supporting countries by coordinating translations has been high on my agenda since the start of the year. Finland continues to strengthen their educational resources, having recently translated the Understanding HAE and Women with HAE patient guides into Finnish. I’ve also been supporting Finland with a future transition to use HAEi’s hosted website solution. A youngster from Finland will be a part of LEAP25, and their project will focus on their website, which will be much easier for the youngster to work on directly when HAEi hosts it. Finland’s early April patient meeting included a LEAP presentation from HAEi.

From the start of the year, I have shared information and enthusiasm for hae day :-) with the Member Organizations in my region. As we approach 16 May and hae day :-), MOs across the region are actively participating in the #active4HAE campaign. With walks, bike rides, and creative ways to get moving, the Nordics HAE community is raising awareness and showing their support through action. Seeing so many patients, families, and supporters come together is inspiring — demonstrating strength, resilience, and a united voice for HAE.

Together, we continue to build a stronger and more empowered HAE community in the Nordics!