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H08 The Swedish lay organization, RHS, approches target groups in a creative and unique way by using its webpage in practical nursing guidance
  1. Carina Hvalstedt1,
  2. Annette Carlsson2,
  3. Maria Linné3
  1. 1Carina Hvalstedt – RN, Project manager at RHS, Lay association HD, Sweden
  2. 2Annette Carlsson – Chairman at RHS, Lay association HD, Sweden
  3. 3Maria Linné – Occupational Therapist at RHS, Lay association HD, Sweden


Huntington’s disease progresses and people with the disease lose their abilities over time. We have gathered knowledge from professionals and developed support that is easily accessible to all concerned throughout the course of the disease. The target group for our project is nursing homes for people with HD, home-based personal assistance services, Centre for daily activities and rehabilitation. We started to create web-based training to meet our target groups. To access valuable knowledge, workshops with professionals were set up to create basic training on HD. This is now available in English. Other key topics are now available in Swedish, such as communication, physiotherapy, activities of daily living, dental care and feeding, followed by more topics. Together with personal interviews and knowledge presented by professionals, the special material has produced text, videos, and practical instructions. The target group of our new project is nursing homes for HD, personal assistance at home and daily activity and rehabilitation centres. We are in our fourth year in the project and working towards certification for the target groups. The education has been available since 2020 and includes different aspects of the disease. Upon completion of the courses the participants receive a diploma. This is a unique training about the field of Huntington’s disease in Sweden and in the world. We have initiated a collaboration with the EHA, to disseminate the training in Europe.

  • Education
  • webtraining
  • diploma
  • collaboration
  • care

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