Online Session ”One Disease, Multiple Stories”: Personal Journeys Through HD Genetic Testing in Sweden
– Written by the Moving Forward team on 14th October 2024
On November 6, the Moving Forward team together with the Swedish HD Association and the YTAN project hosted Sweden’s first ever HD-focused webinar, entitled “One Disease, Multiple Stories: Personal Journeys Through HD Genetic Testing”.
The event was a great success with 47 registered participants and 33 attendees, including some participants from Norway and Finland. The webinar also had several participants from northern Sweden, who often are more isolated because they have longer travel distances.
For some participants it was the first time they attended a
HD-focused event, which made the session even more meaningful.
The event began with three young women sharing their personal experiences of HD genetic testing: one had tested positive, one had tested negative and the third is currently in the testing process. Each spoke for about 10 minutes, providing unique perspectives on the challenges and emotions associated with genetic testing.
After these presentations, participants went into different group rooms, where they were able to connect with the speakers and each other in a more intimate setting. This format allowed everyone to introduce themselves to each other, ask questions and share their personal experiences.
At the end of the session, many participants expressed that they found the webinar very valuable and that they were happy that they were able to hear the speakers’ stories and other HD-related issues. This successful event showed that there is a clear need for more online sessions on different topics in the future. The positive feedback underlined the importance of these sessions in building community, fostering connections and offering support.
We would like to thank everyone who participated and helped make this event possible. We hope that this session provided valuable insights and support to all involved, and we look forward to organizing more virtual meetings in the future!