Word Clouds to Capture the Needs of the Norwegian HD Community

– Written by the Moving Forward team on 9th May 2024

During the Annual Meeting of the Norwegian Huntington Association in Oslo last April, Julie Skarberg, the Moving Forward national coordinator in Norway, was lucky enough to present what the project has done in Norway so far and the plans for the road ahead. Julie also conducted a short survey to hear the voices of the HD community about their needs. This information was thought to be extremely valuable to plan future Moving Forward initiatives, namely future online sessions. This is what people answered:

1. What topics related to HD would you like to learn more about?

Some of the topics that came up were research, which is considered to be very relevant, but also the course of the disease, testing, capacity to consent, public opportunities to get personal assistance and information to provide to relatives. Nutrition and exercise were also topics that were brought up by the meeting attendees – and are some of the topics addressed in the most recent section of the Moving Forward website, Lifestyle Tips for HD families.

2. What can be done to improve social support to HD families?

Some of the most important answers related to openness, information, support, being able to talk to others and activity-based groups. Huntington’s disease is a rare disease and it’s important that those in the community come together and help each other.

3. Is there anything you think is missing for young people in the HD community?

Many felt that there is a lack of information for the young people, especially for those under 18. More advocacy events, psychological help, meeting places and regular local meetings were some of the things that came up. Because Moving Forward is trying to reach out to the  young people, it felt important to hear what the Norwegian HD community had to say about what is missing for these specific groups.

4. What information regarding HD would you like to get more of?

The Norwegian HD community wants more information about rights, what it means to be a carer, where to find proper information and the role of peer counsellors, among other things. 

At the end of the meeting, Julie has confided “Now that I have been with the Moving Forward team for about a year and we have done a lot already, I look forward to the continuation of our work and to see what more we can achieve together. Thank you for the support I have received from the organisation and for giving me the opportunity to work with Moving Forward.”