October 8, 2024
APDIP Launches Petition for SCID Neonatal Screening in Portugal
The Portuguese Organisation of Patients with Primary Immunodeficiencies (APDIP) has launched a significant public awareness campaign and petition to include Severe Combined Immunodeficiency (SCID) in Portugal’s national newborn screening program.
The campaign aims to gather 2500 signatures to bring this crucial issue to the attention of policymakers. The initiative has gained significant media attention, including features on the national television network SIC, highlighting two powerful patient stories. One story focused on Carolina, a SCID survivor whose twin brother tragically passed away due to a late diagnosis. The other story showcased Daniel, now a healthy 14-year-old boy, who was diagnosed with SCID at just two and a half months old and received a life-saving bone marrow transplant at four and a half months.
APDIP is working closely with medical professionals, including the Portuguese Group for Primary Immunodeficiencies (GPIP), to advocate for this life-saving addition to the national screening program. APDIP calls on all Portuguese citizens, especially parents and future parents, to sign the petition and help make SCID screening a reality for all newborns in Portugal.
These patient stories underscore the critical need for early screening and the potential for positive outcomes when SCID is detected and treated promptly. APDIP hopes that by sharing these experiences and gathering public support, real change in Portugal’s newborn screening program will be achieved.
