H21 RHS, the lay association huntington’s disease in sweden approaches their target group in a creative and unique way using the web

Background We all face new challenges as Huntington’s disease have a progress and people with the disease loses their abilities as time passes. We therefore wanted to gather knowledge from professionals and develop support that is easily accessible to all concerned during the entire course of the disease. Aims We wanted to try new ways and methods to raise the level of knowledge about the disease. There is a lot of information available online but it is not always reliable. We wanted to ensure the accuracy of the information with a close cooperation with professionals with specific knowledge about HD in Sweden. We wanted to make sure that we reach the target groups with specific information for everyone both gene carriers, people with HD, relatives and professionals. Methods We started to create a responsive website as a platform on the internet to meet all target groups. To gain access to valuable knowledge workshops with professionals was set up in a number of important topics such as; medical treatment, genetic counselling, communication, physiotherapy, occupational therapy, dental care and nursing. Together with personal interviews and knowledge presented by professionals the specific material were produced as text, films and practical instructions. Results/outcome Two web-based education programs were presented: Basics about Huntington’s disease and symptoms for the public and nursing at Huntington’s disease for the profession. The programs are available at www.huntington.se At present approximately 5000 people have visited the web-based courses. Conclusions As a conclusion we have succeeded with the project as planned. During the project, we have linked many contacts with both professionals and others in our constant work to raise the level of knowledge for both gene carriers, people with HD, relatives and professionals.