SelEe- Rare diseases citizen science research

Abstract

The citizen science project SelEe ('Researching rare diseases in a citizen science approach') aims to research rare diseases in collaboration with citizens by using digital applications. SelEe adopts a participatory approach as it is important to recognise the active role of patients and their families as informed partners. They are often the experts on their own disease. Similarly, involving citizens beyond those affected can increase the visibility and understanding of rare diseases. Citizens can contribute their strengths, engage socially and learn new knowledge about digital apps, the diseases and their research. Engaging citizens in a continuous exchange of information as well as developing digital applications for research can make research more accessible to citizens while strengthening research and its relevance.