PoS - Proceedings of Science
Volume 407 - Austrian Citizen Science Conference 2022 (ACSC2022) - Austrian Citizen Science Conference 2022
SelEe- Rare diseases citizen science research
M.C. Neff*, J. Schaaf, J. Scheidt, A. Khouri, T. Zerr and H. Storf
Full text: pdf
Published on: January 02, 2023
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.
DOI: https://doi.org/10.22323/1.407.0024
How to cite

Metadata are provided both in "article" format (very similar to INSPIRE) as this helps creating very compact bibliographies which can be beneficial to authors and readers, and in "proceeding" format which is more detailed and complete.

Open Access
Creative Commons LicenseCopyright owned by the author(s) under the term of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.