Screen4Rare, the platform led by IPOPI, the International Society for Neonatal Screening (ISNS) and the European Society for Immunodeficiencies (ESID) has progressed in the past months. As part of its strategy, Screen4Rare has reached out to the European Reference Network for PIDs and other auto-immune and auto-inflammatory disorders (ERN RITA) and to the Reference Network for hereditary metabolic disorders (MetabERN). These two Networks provided their support to the initiative and will be willing to support future work.
The platform has also been in contact with representatives of the European Commission and of the European Parliament to continue raising awareness on the importance of the campaign as well as keeping informed the base of supporters in these institutions.
Stay tuned for upcoming updates through the EU Health Policy Platform where Screen4Rare has become a Stakeholder Network to update the wider community of its progress.