June 16, 2025
News on newborn screening and INSD2025
June 28 is soon approaching, and we are looking forward to hearing how our NMOs are planning on landmarking this day! From the IPOPI and Screen4Rare sides, communication materials have been updated so anyone interested can use them to help raise awareness. Check the website and see how you can best engage in this international celebration of the life-changing impact of screening for SCID and other rare diseases in newborn babies and their families!
The past months have been very active in terms of developments on the topic of newborn screening.
As of April 1, 2025, Portugal has started screening newborns for severe combined immunodeficiencies (SCID). This major achievement follows an advocacy campaign led, with the support of IPOPI, by the Portuguese PID patient organisation (APDIP) and their medical advisors.
On April 16, 2025, France announced the inclusion of SCID in the national newborn screening programme. This decision will be effectively implemented as of 1st September 2025. This long-awaited decision comes after a long advocacy campaign led by the French PID patient organisation (IRIS), experts in the field of PIDs, and supported by IPOPI.
