International Neonatal Screening Day (INSD) / 28 JUNE

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The International Neonatal Screening Day (INSD) aims to promote the importance of neonatal screening. It aims to foster collaboration and exchange of best practices to enhance routine screening processes and ensure that the latest scientific findings are integrated. Today, MetabERN is pleased to join the celebrations for the vision of those who have helped make neonatal screening possible.

Neonatal screening goes beyond being just a test; it is a powerful public health intervention with the ability to identify and address disorders at their most critical stages, offering hope for better outcomes and improved quality of life for affected children and their families worldwide.

A recent #RareBarometer survey study (see the publication) on the time to diagnosis and determinants of diagnostic delays conducted by Eurordis-Rare Diseases Europe has highlighted that a wide majority of participants would have liked their rare metabolic disease to be diagnosed at birth (see the infographic with the results).

MetabERN is a partner of the Screen4Rare multi-stakeholder initiative, which in this press release is calling on governments to thoroughly evaluate the importance of newborn screening in the formulation of public health policies. It emphasises the need to expand the reach of this life-changing intervention to benefit a larger number of children in 2024.