December 16, 2024
Screen4rare discusses at the European Parliament how the EU can support countries on Newborn Screening
On November 6, 2024, Screen4Rare founder organisations – IPOPI, ESID and the International Society for Neonatal Screening, (ISNS)- held a meeting at the European Parliament (Brussels, Belgium) to discuss how to prioritise newborn screening for treatable rare diseases with greater support from the EU in the next EU political mandate (2024-2029) and the benefits of the collaboration between Screen4Rare and the European Reference Networks (ERNs).
The event, hosted by S4R champion MEP Billy Kelleher (Renew, Ireland) and supported by the participation of MEP András Kulja (EPP, Hungary) representing the S4R MEPs Alliance, fostered dialogue between EU institutions and S4R leaders Johan Prevot (IPOPI), Prof. James Bonham and Peter Schielen (ISNS). Progress of the ERNs’ work was also underscored thanks to valuable insights provided by Dr Andrea Bordugo and Prof Maurizio Scarpa (ERN MetabERN), and Dr Alessandra Magnani (ERN RITA).
Challenges persist in ensuring equitable and sustainable NBS (Newborn Screening) across Member States, one example being that funding gaps hinder the full integration of ERNs into national systems. While more screening does not necessarily mean better screening, there are significant and unwarranted differences in the number of conditions screened across Member States. New advances in genomic sequencing present a crucial opportunity, but sustained EU political support and coordination over the next five years will be essential to realise these possibilities and to avoid further inequity.
Support for these efforts was reaffirmed during recent high-level meetings. Former Health Commissioner Stella Kyriakides expressed her endorsement of S4R’s objectives in September 2023.
Further, the EU Commission invited S4R to present its goals at the ERN Board of Member States meeting of October 22, 2024, marking an important step in fostering direct dialogue with national policymakers.
