Newborn Screening campaign

Severe Combined Immunodeficiency (SCID) is the most severe form of PID and a paediatric emergency. Children born with SCID lack a working immune system and will die in the first year of life if undiagnosed and untreated. Screening newborn babies for SCID is possible and cost-effective.

IPOPI strives to ensure that babies born with SCIDs can have access to the earliest diagnosis possible allowing for successful and curable treatment.

IPOPI started raising awareness of the importance of SCID newborn screening (NBS) in the late 2000s in partnership with the European Parliament and with the strong commitment and support from MEP Ms. Glenis Willmott. A call for EU Recommendations on newborn screening for rare diseases such as SCID was the starting point and many regional and national SCID campaigns have followed.