An inspiring online session for the Norwegian HD community

– Written by the Moving Forward Team on February 15th 2024

At the end of January, the Moving Forward team organized an online session for the Norwegian HD community with the topic “Genetic Testing for HD: There are no Right or Wrong Choices”.

We invited three people to tell their stories about their connection to Huntington’s disease and their experiences with HD genetic testing.

Some months ago, when we conducted a survey to understand the needs of the Norwegian HD community, people told us they would like to learn more about genetic testing.

People also told us they would feel comfortable in attending online meetings. Therefore, the Moving Forward team has set up this online session. 23 people attended the online session, which was not recorded so that everyone could feel comfortable during this informal conversation about a difficult and complex theme.    

The online session consisted of two parts. First, each speaker shared their personal story related to HD genetic testing with the session attendees. Then, each attendee had the chance to join a smaller group, as we have set up three different online rooms for the three speakers. In the smaller groups, there was an introduction round and people had the chance to know each other better, share their own experiences and ask specific questions to the speakers.

The Moving Forward team realised that there was a great need for the Norwegian HD community to meet and talk openly with other people who are in the same situation, share experiences and get peer support. The online session was arranged to last an hour, but people felt the need to talk for a bit longer, so the session ended up lasting two hours.

Taking a genetic test is a difficult choice, but there are no right or wrong answers.

This is a sensitive and complex topic to talk about, so it is important that the community stands together and that people support each other when opening up about difficult and personal experiences. 

Based on the positive feedback from this session, the Norwegian Moving Forward team is planning further online sessions for families to have an opportunity to meet others and share stories.

We want to thank everyone who joined us in this session and shared their stories. We hope that this initiative has provided good support and positive learnings to all those involved.

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