Research ICF-questionnaires

In 2022, the Shwachman Support Holland Foundation and Rare Care World developed ICF-questionnaires for a number of rare disorders, including SDS (Shwachman Diamond Syndrome). An article about this appeared in 'Ieder(In)' in August 2023. The readers who responded to the article and wanted to participate in a follow-up study on ICF questionnaires received an updated questionnaire in early 2023. The University of Groningen is processing the answers. The results are expected around the summer of 2023.

Link to article in Ieder(In) in Dutch https://iederin.nl/eindelijk-een-manier-om-te-laten-zien-hoe-jouw-ziekt…