The European Huntington Association met the Icelandic HD Community – and was really impressed
– Written by the Moving Forward Team on May 22nd 2023
The European Huntington Association was very happy to attend the Conference of the newly established HD Association of Iceland. The meeting was held at the modern campus of the Reykjavík University on May 15th, the International Huntington’s Disease Awareness Day.
About 50 family members, healthcare professionals and researchers attended this Conference with the topic “Developments in Huntington’s Disease: From Genetics to Therapy”, which was also live streamed.
After a warm welcome by Sveinn Viðar Guðmundsson, the Founder and President of the HD Association of Iceland (Photo 1), who gave a quick overview of the afternoon program, the Conference was opened by the Icelandic Minister of Health, Willum Þór Þórsson (Photo 2).
It is always fantastic to have Huntington’s Disease on the radar of national politicians, so it was impressive to see the availability and commitment of the local stakeholders and decision makers to embrace this event.
This was also the case of the Dean of the Reykjavík University, Bryndís Björk Ásgeirsdóttir, who welcomed everyone and shared the relevant contributions of this institution to the neuroscience research field (Photo 3). The neurologist Ólafur Árni Sveinsson (Photo 4), based at Landspítali – The National University Hospital of Iceland, presented the clinical aspects of Huntington’s disease and talked about the studies his team is doing to learn about the number of people affected by Huntington’s disease in Iceland (HD epidemiology).
Then, Gyda Bjornsdottir, a researcher at deCODE Genetics Iceland (Photo 5), presented the work this biopharmaceutical company is doing to analyse and understand the human genome and genetic mutations such as the HD CAG repeat expansion. Gyda also mentioned the “Book of Icelanders”, a database that contains information about the ancestry of almost all Icelanders for whom records exist. An extremely interesting way for the Icelandic HD community to learn about their family trees.
The first part of the Conference ended with an fascinating presentation by Jón Jóhannes Jónsson (Photo 6), the Director of Genetics and Molecular Medicine at Landspitali, who explained in a family-friendly language how molecules work and are impacted in HD. After a nice coffee break, Astri Arnesen, the President of the European Huntington Association (Photo 7), presented the many ongoing and planned HD clinical trials to an audience eager to stay updated about the advances and setbacks on the research path to get effective treatments for HD.
Then, it was time for Filipa Júlio, the Project Coordinator of the European Huntington Association (Photo 8), to speak about the needs of people at risk for HD and people with premanifest HD in the context of a specific EHA project – Moving Forward. The Icelandic HD community was positively responsive to the project and pleased with some of the online resources provided by the Moving Forward team. The HD family members seemed to be particularly interested in the online psychological support service that is being provided in Spain and there were some questions about the possibility of this action being replicated in Iceland.
Vigdís Stefánsdóttir, the Genetic Counsellor at Landspitali University Hospital (photo 9), ended the formal presentations, by discussing the genetic counselling practices and pathways available for families affected by Huntington’s disease in Iceland.
The Conference closed with a panel discussion and Q&A with all the speakers, moderated by María K. Jónsdóttir, Professor of Neuropsychology at the Reykjavík University. This was a lively and interesting moment to answer to many questions, hear insightful comments and learn about the needs and experiences of the Icelandic HD community.
The European Huntington Association team realized, once more, that HD knows no borders, and that even in more isolated countries such as Iceland, the HD community is deeply committed and motivated to make a difference in the rare disease field. This Conference reflected the power that a relatively small community from a relatively small country has when people join forces, stay informed, spread the word about HD and advocate for better care and support.