Huntington’s Disease (HD) is a rare genetic neurodegenerative disease. When the first symptoms occur, people have to live with increasingly reduced functioning, such as cognitive skills, speech, and balance, until their end of life. Until today there is no cure for this disease, so people need to cope with it.
Early therapy and support can significantly increase people’s quality of life with the disease. In this project, we therefor aimed to increase the accessibility of HD care for people with the disease and their close social circle. In collaboration with them, we developed a European online platform that provides the information that they are looking for as well as a large variety of contact possibilities with local professional HD care providers.
The design process allowed people with HD, their partners, and healthcare providers to directly participate in the selection of functions and the look & feel of the online platform. In collaboration with a European consortium of expertise centers and hospitals, a prototype of the online service platform was developed, including the organisation of professionals that should support the platform prototype.