ERN eUROGEN Results: Newborn Screening Survey

Last year, Rare Barometer asked ERN eUROGEN to assist with their Newborn Screening (NBS) Survey by providing a validated list of rare uro-recto-genital diseases. Using this, they could target respondents, and 117 people living with or caring for someone with one of the diseases completed the NBS survey.

We are now very pleased to share the NBS survey results in the form of a factsheet summarising the main results for the rare uro-recto-genital diseases community and a dashboard of ERN eUROGEN results with tables and/or graphs per question.

You can also see and compare the ERN eUROGEN results with the overall European results, which have been published in the European Journal of Human Genetics and on the EURORDIS webpage.