Moving Forward at the Norwegian Huntington Association Annual Meeting in Oslo

– Written by the Moving Forward team on 2nd May 2024

From 12 to 14 April 2024, the Norwegian Huntington Association held a seminar and annual meeting in Oslo, which was attended by around 60 participants. 

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.

Marleen Van Walsem, who works in the team of Lasse Pihlstrøm, talked about the new research project taking place in Norway, NAD-HD.

This research study involves testing high doses of vitamin B3 to see if this can have a protective effect on brain cells and delay the progression of Huntington’s disease. This study will recruit 120 participants with a confirmed diagnosis of HD. If you would like to participate in the study, please send an email to 

Anders Skogstad, a former clinical nurse and carer, gave a presentation about the care path of people impacted by Huntington’s disease. A document reporting the HD care path has been prepared to help ensure that people with the disease and their relatives receive the necessary treatment and follow-up throughout the course of the disease. Anders went through the most important points in the care path and explained a little about it. 

Julie Skarberg, the national coordinator of the Moving Forward project, presented the main activities the team has been implementing in Norway for the past months. The project aims to provide proper information and support to the young generations from HD families and bring them closer to research. Julie spoke about the online content production and translation for the Norwegian HD community, the language specific research webinars and the online sessions to address important HD-related topics, such as genetic testing and ways to get adequate help.

At the end of the presentation, Julie run a survey to learn about what do the meeting attendees would like to hear more about when it comes to HD, what do they feel is missing for young people in the Norwegian HD community and what do they think can be done to improve social support in Norway. 

There was also a peer counselling course that lasted about 5 hours between Saturday and Sunday. There are about 30 peer counsellors in the Norwegian Huntington Association. The attendees were given an overview of what it means to be a peer counsellor and how the work should be properly documented. Being a peer means that you are in a similar life situation to the other person, and your interaction will provide help, support or guidance to both of you. Peer counselling can be anything from a phone call to face-to-face meetings such as having a coffee with the other person. 

This was a weekend where the Norwegian Huntington community came together and shared experiences and knowledge. One of the things that means the most at these gatherings is what happens outside the meeting room, during the breaks and dinner, when attendees have the opportunity to get to know each other better.

The Moving Forward team would like to thank everyone for a fantastic weekend, we feel that we couldn’t have had a better community around us and that we are really lucky to be part of this community where we support and help each other in difficult situations.