Story cards of RD-affected persons

Story cards of RD-affected persons

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Background Due to their low prevalence (< 5 in 10,000), rare diseases are an important area of research, with the active participation of those affected being a key factor. In the Citizen Science project “SelEe” (Researching rare diseases in a citizen science approach), citizens collaborate with researchers using a digital application, developed as...

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Context 1
... of the 19 invited participants attended in the workshop. They were able to define 10 user stories (visualised as story cards), which are shown in Fig. 5. If they referred to specific RDs, this information was anonymized for data protection reasons (anonymous terms are capitalised e.g. ...