Last week, the Moving Forward team organised an online session for the Norwegian HD community, which was attended by 18 family members and was led by Mats and Julie, the Moving Forward coordinators in Norway. The theme of this online session was what it is like to be the partner of a person with HD. Two members of the community shared their personal journeys and insights about life alongside someone with Huntington’s disease.

Both stories were wonderful and informative, and there were many questions afterwards when the speakers had finished their stories. 

The topic generated a lot of interest and shows how important it is to have a space for families impacted by this disease, so that people do not feel so alone. Several of the participants in the session called for better services for partners/relatives, both within the association and in the wider Norwegian healthcare system. It is often the case that only the person with HD receives all the attention and that the partner is often forgotten. This is a disease that affects the whole family, not just the person who is ill, and it is therefore important that relatives are seen and heard.