What role for neonatal screening in future EU rare diseases policy?

Screen4Rare (S4R) is a multi-stakeholder platform which aims to exchange knowledge and best practices on Newborn Screening (NBS) for rare diseases. It was launched by the International Patient Organisation for Primary Immunodeficiencies (IPOPI), the International Society for Neonatal Screening (ISNS), and the European Society for Immunodeficiencies (ESID). It’s also the initiative that launched International Neonatal Screening Day.

Newborn Screening would be an integral part of an EU rare diseases strategy. European and national authorities have already been called upon to act to reduce the inequalities resulting from the existing heterogeneity in national approaches to screening and prevention of rare diseases and work together to support more informed and transparent decision-making.

For this reason, S4R is committed to advocating to raise NBS as a fundamental tool to access care. NBS is critical to unlock the potential of new developments in genomics and personalized medicine. S4R believes that a strategy that responds holistically and comprehensively to people’s needs, which also includes measurable targets, would ensure that all Member States work in the same direction. It would allow the EU to become the international example of achieving equity for the rare disease community.

  • Organiser: Screen4Rare

  • Date & Time: 28 June, 2023, 12h00-14h00 Central European Summer Time

  • Activity: In Person Event

  • Location: Hotel Radisson Red Brussels, Belgium

  • Social Media: Twitter

  • Contact: Samuele Bridges, samuele@bridges.be