Screen4Rare is 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) aiming to exchange knowledge and best practices on NBS for rare diseases.
The group’s ultimate objective is, through policy engagement, to work towards ensuring that all babies can have equitable access to newborn screening; a life-saving tool for conditions such as SCID.
Screen4Rare is a multi-stakeholder platform who look to support international, regional policy makers, and decision-makers in the area of newborn screening.
We aim to do so through the provision of unbiased scientific information, evidence, and comparative data so as to help ensure the best decisions are made on behalf of the populations that they serve.
Our primary goal is to help promote ‘The development of appropriate, well-organised and equitable newborn screening offered on a voluntary and informed basis to families to help identify well-defined treatable conditions where it is clear that their early asymptomatic detection and treatment during childhood results in significantly improved outcome.’