On 14 September 2021, representatives of the European Commission, European References Networks (ERNs), and Screen4Rare1 officially launched the ERN Expert Platform for Newborn Screening. The objective of the platform is to promote newborn screening (NBS) across the EU and develop a mechanism of ERN cooperation with the goal of implementing Screen4Rare Call to Action on Newborn Screening for Rare Diseases. The ability of ERNs when it comes to the generation and centralisation of data aligns perfectly with the call to action and its proposal for the EU to become a central point for data collection and information on rare diseases newborn screening practices.
ERN Expert Platform for Newborn Screening is accessible through the EU Health Policy Platform.