Online session with the highlights of the EHDN 2024 Conference for the Norwegian HD Families
– Written by the Moving Forward team on 14th October 2024
Two weeks ago, the Moving Forward team, in collaboration with the Norwegian Huntington Association , hosted an online session for the Norwegian HD community to recap key insights from the 2024 EHDN/Enroll-HD Conference in Strasbourg, France.
Our goal was to provide an opportunity for those unable to attend the conference to hear directly from Norwegian family members and professionals who participated in the event.
The session aimed to bring the latest updates to the wider community, with a focus on the conference’s most relevant findings for individuals impacted by HD.
To offer a range of perspectives, we invited three speakers with diverse expertise to share their experiences and insights from the conference:
- Siri Hagen Kjølaas, a psychologist and PhD graduate, who attended the conference as a speaker, where she discussed the importance of providing psychological support to people growing up in a family impacted by HD.
- Marleen Van Walsem, an HD neuropsychologist and researcher, provided valuable insights into the neurological and psychological aspects of HD, summarizing the latest research and advancements discussed at the conference.
- Julie Skarberg, board member of the Norwegian Huntington Association and project coordinator for Moving Forward in Norway, offered a family-centered perspective on the conference’s key takeaways and their implications for families living with HD.
The session was moderated by Geir Vikersund, head of the Norwegian Huntington Association, who not only introduced the speakers but also shared his own experiences from past HD-related conferences.
Geir’s reflections on the importance of these events for both the community and research were an added bonus to the session. The event attracted 35 registrations, with 18 participants attending the session live.
We are grateful to all those who joined and contributed to making this online session a success. It was a meaningful opportunity for the Norwegian HD community to come together, learn from each other, and stay connected with the latest developments in HD research and support.
If you had to summarise the conference in one word, what would it be?
“Inspiring! Because so many researchers and professionals are working to improve the lives of people and families affected by Huntington's disease, but also because this year's conference provided space for lived experiences. The programme reminded us that it's the needs of those affected by HD that should govern what and how we research the disease.”
"Engaging! The varied programme including new knowledge, updates on clinical trials, personal experiences and new initiatives that make a strong impression, as well as a social programme helped to further strengthen my commitment. It reinforced my drive and determination as well as the many opportunities to continue contributing in collaboration with everyone else to improve the lives of everyone affected by Huntington's disease."
What would you say to encourage newcomers to attend an HD conference?
“You should definetely attend an HD conference because you get to experience the strong community of researchers, professionals, patients and carers - all united around a common goal: Hope for Huntington's.”
"You join a unique community of people from different backgrounds (researchers, professionals, patients and relatives) from all over the world. Everyone is working towards a better everyday life both today and in the future for everyone affected by HD. You see the hope for Huntington's disease and you have everyone who contributes and works for it together."