The International Neonatal Screening Day (INSD) was launched in 2021 to raise awareness of neonatal screening and the potential benefits it can provide worldwide. In 2022, as part of the celebration, Screen4Rare – a multi-stakeholder platform launched by the International Patient Organisation for Primary Immunodeficiencies (IPOPI), the International Society for Neonatal Screening (ISNS), and the European Society for Immunodeficiencies (ESID) – co-organised an event with the MEP Alliance for Rare Disease Newborn Screening (NBS) to highlight the relevance of NBS within the EU and to consider how to move forward for more equitable access. We shared the latest updates from our ERN Expert Platform, considered the status of NBS in the EU and heard from members of our MEP Alliance about current EU actions.
Together, we aimed to raise awareness of NBS on the EU level, as well as considered how the EU can support Member States in using best practices for NBS through a multi-stakeholder discussion. The topic of newborn screening was particularly prevalent as the EU prepares to review EU legislation on rare diseases, which will be a focal point of the upcoming Council Presidencies. As such, we were delighted to host this multi-stakeholder political discussion to catalyse the conversation surrounding newborn screening in the EU.