In the field of rare diseases, gathering data on prevalence through regional or national pilot projects over short periods of time can be problematic, especially in those countries with low population or birth rates. For this reason, there is an urgent need to improve the mechanisms by which NBS is assessed and adopted by different EU Member States, for all newborn EU citizens to have the same access to life-saving preventative programmes. Currently, there is no EU centralized body or resource that can act to recommend, guide or share data on newborn screening practices. This leads to the slow uptake of newborn screening in Member States, a live saving tool for babies.
In light of the above, the undersigned Members of the European Parliament, together with the supporting organisations, including Screen4Rare, a multi-stakeholder initiative launched by the International Patient Organisation for Primary Immunodeficiencies (IPOPI), the International Society for Neonatal Screening (ISNS), the European Society for Immunodeficiencies (ESID), are calling on the European Commission and Member States to: