Celebrating 45 Years of the Norwegian HD Association: Shaping the Future at the Annual Meeting in Oslo
– Written by the Moving Forward team on 14th May 2025
On the weekend of 25–27 April, the Norwegian HD Association held its annual meeting in Oslo – and this year with record attendance! A total of 91 participants registered, and it was particularly gratifying to see so many young adults participating – more than ever before.
The weekend began with an introduction of the Norwegian Huntington Association Board and several Regional Teams.
Then, Astri Arnesen, President of the European Huntington Association, gave an overview of what’s going on in HD research across the globe. Research is a topic of great interest to the Norwegian community, and many people are excited to learn about what is happening and whether there is any significant progress in sight. Astri has built up a great deal of expertise when it comes to research, and she does a great job communicating about the latest research updates in a simple way to those who are not professionals.
Friday – arrival and gathering
The weekend began with a board meeting on Friday, where the board reviewed current issues and planned the various activities and tasks for the weekend. Several participants had already arrived that day, and in the evening we gathered for a dinner together – a pleasant opportunity to get to know each other and talk about the weekend ahead.
Saturday – professional development and anniversary celebrations
On Saturday morning, the association’s leader, Geir Viksund, opened the gathering with a warm welcome and a review of the day’s programme. We also marked an important anniversary – it is 45 years since the Norwegian HD Association was founded. For this occasion, Geir Viksund and Arvid Heiberg, doctor and professor of medicine, took part in a panel discussion about the association’s history and hopes for the future.
This was followed by a presentation by Nora Raaf, PhD student at Oslo University Hospital, on the NAD-HD study – a treatment study of high-dose vitamin B3. The aim of the study is to investigate whether this dietary supplement can slow down the progression of the disease and improve symptoms in people with Huntington’s disease. The study is open to people between the ages of 18 and 80 who have symptoms of the disease. If you would like to participate, please send an email to: NAD@huntington.no.
After this, Astri Arnesen, president of the European Huntington Association, gave us an inspiring overview of international research. Although she is not a doctor or researcher, during the many years of patient advocacy Astri has acquired extensive knowledge and updated insights into how far research has come.
We were also visited by the professional network for Huntington’s disease, which gave a useful presentation on nutrition and adapting food for people with swallowing difficulties. They showed videos with tips on how to make nutritious pureed food that both looks delicious and stimulates the appetite.
Later in the day, we were visited by politician Simen Velle, who has been open about HD in his own family. He participated in a panel discussion with Astri Arnesen, where he talked about being open and how he wants to contribute to more visibility and openness in society regarding this disease. He is an important role model and an important voice for the Association.
At the end of the meeting, the Moving Forward team hosted a dedicated session for young people aged 18 to 35, with around 16 participants taking part. The focus was on three key themes: empowerment, support, and information—topics we believe are essential for the younger generation within the Huntington community. The session was divided into two parts. First, participants were invited to share their thoughts by writing directly on post-its what words come to their mind when thinking about each topic. Then, we split into three smaller groups to explore each theme more deeply through discussion, namely which were the obstacles and facilitators to people feeling more empowered, supported and informed. The goal was to create a space where young voices could be heard and their perspectives truly valued.
Saturday evening ended with a lovely anniversary dinner at Frognerseteren, led by Astri Arnesen. A fantastic dinner and dessert were served, and the evening was enlivened by singing, festive decorations and a great atmosphere. It was a fitting celebration of 45 years of work and community.
Sunday – future, commitment and conclusion
Sunday began with a presentation by Julie Skarberg, who presented the Moving Forward project and the action plans for 2025. There are many exciting things in store, and it was clear that many appreciated the work being done to include and support young adults residing in Norway. Julie also talked about the trip to Prague and the HDYO conference, which was attended by 16 young adults from Norway – a great success and an experience the participants will remember for a long time.
The weekend was rounded off with the annual members’ meeting, where important issues were discussed.
Finally, the Moving Forward team would like to express their sincere thanks to the Norwegian HD Association for a fantastic and meaningful weekend.
We look forward to continuing our fruitful collaboaration!