June 25, 2020
The multi-stakeholder campaign led by IPOPI, the International Society for Neonatal Screening (ISNS) and the European Society for Immunodeficiencies (ESID) continues strengthening itself. As part of the strategy, the group decided to build on the achievements reached and create Screen 4 Rare.
Screen 4 Rare is a multi-stakeholder initiative launched by IPOPI, ISNS and ESID aimed at exchanging knowledge and best practices on NBS for rare diseases. Its ultimate objective is to ensure all babies born in the EU can have equal access to NBS which can be a life-saving tool for conditions such as SCID. The initiative has gone live as a Stakeholders Network on the EU Health Policy Platform, a platform developed by the European Commission aimed providing an interactive tool to stakeholders so they can share knowledge and information on their domain, in this case, newborn screening for rare diseases.
This important milestone builds on a series of achievements reached by the campaign such as having a Call to Action on newborn screening for rare diseases that has gathered the support of 30 Members of the European Parliament or a successful event in December 2019 at the European Parliament in Brussels (Belgium). More information can be found here.
To request access to the Screen4Rare network, log in to the EU Health Policy Platform here.