Year: 2024
Type: conference-abstract
Abstract: Background Huntington’s Disease (HD) has a long history of stigma and isolation. Stigmatization is often related to ignorance and misconceptions about HD and particularly impacts families living in more isolated regions. Aims The European Huntington Association (EHA) aims to provide safe and informal spaces for the local HD communities to overcome these hurdles, connect and share their stories. Methods The EHA and the local associations conducted six online sessions with the topic ‘One Disease, Multiple Stories’ – two sessions for the Spanish-speaking community, two sessions for the Scandinavian-speaking community, one session for the French-speaking community and one session for the Dutch-speaking community (figure 1). During each session, family members with distinct HD statuses spoke about their personal experiences related to the disease. The sessions were moderated by patient advocates, were open to all and were not recorded, to provide a unique and comfortable experience to everyone involved. Data from the Dutch session was used to assess the scope of these actions. Results 371 individuals registered in the six online sessions. The session for the Dutch-speaking HD community had 61 registrants, 55.7% from Flanders-Belgium and 44.3% from The Netherlands. 45.9% of the registrants attended an HD-related event for the first time. 60.6% were family members, 19.7% were professionals, 11.5% were HD Association representatives and 8.2% choose ‘other’. Conclusions These sessions seem to be a good online resource for HD Associations to bring down language and geographic barriers, reach out to those who are not involved in HD-related initiatives and connect the broader HD community.
Authors: Filipa Júlio, Astri Arnesen, Ruth Blanco, Eva Calabuig Tortosa, Albert Counet, Wouter De Maeyer, Dina De Sousa, Ruth Fonteyn, Ghislaine Gaté, Olivier Graf, Rob Haselberg, Marc Issandou, Danuta Lis, Svein Olaf Olsen, Giorgos Papantoniou, Saija Ristolainen-Kotimäki, Julie Skarberg, Inès Zerzeri
Institution: Huntington's Disease Association
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402374571