The Moving Forward project welcomes Sweden on board!

– Written by the Moving Forward Team on  February 8th 2024

The European Huntington Association has recently started a close collaboration with the Swedish HD Association to run the Moving Forward project in Sweden.

The first step of this collaboration is to better understand the experiences and needs of the Swedish HD community and provide them with adequate support and information. Therefore, the Moving Forward team has created a survey to learn more about the country-specific needs and is working to produce and translate helpful HD-related contents, which can be found in the Swedish version of the Moving forward website.

Specifically, the Moving Forward team wants to learn more about the needs, concerns and expectations of the younger generations impacted by HD and how they feel about HD research. Several European countries are already participating in the project, including Russia, Spain, Belgium, Norway and France.

Maria Linné is the Moving Forward project coordinator in Sweden. She has a background in occupational therapy and has worked at the Swedish HD Association for 4 years. She is also managing a project for young people in Sweden and sees great advantages in starting a co-operation with Moving Forward.

“We know that there is a great need among the families to get information and new knowledge about HD but also to stay updated on what is happening in research. My expectations for the project are that we will reach out to more young people so that they can get new knowledge about HD and keep up to date with what is happening in HD research. It will also be easier for families in Sweden to take part in all the work being done internationally, which is both hopeful and inspiring.”

Annette Carlsson, President of the Swedish HD Association says that she and the Board are looking forward to this collaboration, which started after the Swedish team attended the EHA conference in Belgium in the Autumn of 2023.

So, the first important step of the Moving Forward project in Sweden is to find out the specific needs of the Swedish HD families. The survey has two main goals:

  • To better understand what people impacted by HD in Sweden want from HD Associations
  • To better understand how the Swedish HD community feels about HD studies and trials

The survey is completely anonymous, easy to complete and brief. Importantly, the Moving Forward team will be able to plan meaningful actions based on the information received. So if you come from a family affected by Huntington’s disease and live in Sweden, please spend a few minutes of your time and take our survey to help us better understand your needs!