The European Commission was pleased to invite ERN Coordinators and Project Managers to the launch meeting of the ERN Expert Platform for Newborn Screening that will be held on 14th September.
This roundtable convened by ERN RITA, MetabERN and Screen4Rare was aimed at considering how European References Networks (ERNs) could contribute to an EU-wide approach to newborn screening for rare diseases in the European Union (EU).
The meeting was structured around the development of an ERN initiative on newborn screening for rare diseases (provisionally named the ERN Expert Platform for Newborn Screening) because of the key role they can play in advancing newborn screening for rare diseases in the EU.
The Screen4Rare Call to Action on Newborn Screening for Rare Diseases – which has received the support of 30 Members of the European Parliament, ERN RITA, and MetabERN – formed the core of the meeting’s discussion. The ability of ERNs when it comes to the generation and centralisation of data aligns perfectly with Screen4Rare’s proposal for the EU to become a central point for data collection and information on rare diseases newborn screening practices.
Nico Wulffraat, ERN-RITA coordinator had a presentation on ‘ERNs and Newborn Screening: Addressing Gaps for EU Good Practices’, together with his colleague Maurizio Scarpa, MetabERN coordinator.