The 2nd MEP Alliance Event for screening 4 rare diseases on "The pivotal role of Newborn screening in future EU rare diseases policy"

The event will be taking place in person at the European Parliament in Brussels, on Wednesday, 30th of November, from to CET. The event will be hosted by MEP Stelios Kympouropoulos and MEP Deirdre Clune in collaboration with />
The MEP Alliance for Rare Disease Newborn Screening (NBS) was created by Screen4Rare - a multi-stakeholder platform launched by the International Patient Organization for Primary Immunodeficiencies (IPOPI), the International Society for Neonatal Screening (ISNS), and the European Society for Immunodeficiencies (ESID) - which they co-organize this event to discuss how can future EU RDs policies, including the EU action plan for rare diseases, best support Member States in delivering effective NBS programmes. We will share the latest updates from our MetabERN/Screen 4 Rare experts' platform, considering the latest innovations across NBS in the EU and exchanging views with the European policymakers about current EU actions, and the possibility of a new policy framework for rare />
Together, we aim to bring together Neonatal Screening Experts, EU Policymakers and national governments representatives to explore how we might best help EU Institutions to consider the current and future potential of newborn screening as part of an overall rare disease strategy. It is recognized that this will require input from professionals, patients and the public when evaluating the emerging possibilities offered by rapidly developing technology in this area. It is crucial that NBS fulfils a clear role in any future EU strategy on rare diseases such as the new EU RDs action plan and this event will highlight the role of NBS in this />