Maastricht – October 14, 2026 -- More than half of respondents to the MAPPA patient survey received a primary immunodeficiency (PID) diagnosis after age 18, and 28% reported permanent damage at the time of diagnosis, according to preliminary findings Kedrion Biopharma and AIP APS will present at ESID 2026.
MAPPA survey expands from Italy to Portugal, Spain and Turkey
The survey was developed by AIP APS, the Italian Association for Primary Immunodeficiencies, in collaboration with Kedrion. It collects real-world data on the experiences of people living with PIDs across Europe. The expansion from Italy to Portugal, Spain and Turkey is expected to provide new evidence on patient pathways, diagnostic journeys and unmet needs.
AIP APS President Alessandro Segato said that turning patient experiences into evidence helps identify shared needs that might otherwise remain unseen, and can strengthen diagnosis, care and support at a European level.
Physicians and patient groups flag late diagnosis of secondary immunodeficiencies
Physicians, patient advocates, researchers and industry representatives at ESID 2026 are calling for greater attention to Secondary Immunodeficiencies (SIDs). Their clinical relevance has grown with wider use of immunosuppressive and biologic therapies and advances in treating hematological malignancies. Late or missed diagnosis can lead to recurrent severe infections, hospitalization and impaired quality of life.
Johan Prevot, Executive Director of the International Patient Organization for Primary Immunodeficiencies (IPOPI), said awareness, diagnosis and patient support differ significantly between countries. He added that a significant subset of SID patients has an underlying, previously undiagnosed PID.
Dr. Silvia Sánchez-Ramón, Head of Immunology at La Paz University Hospital in Madrid, said patients need earlier recognition, stronger collaboration among specialties and wider adoption of evidence-based practices.
Kedrion to present two posters at ESID 2026
Kedrion will present one poster on safety data for an immunoglobulin therapy and another on the MAPPA initiative's international expansion. Gorana Dasic, Vice President and Global Medical Affairs Head at Kedrion, said the company is pursuing research collaborations and patient-focused projects to build networks that support earlier diagnosis and more informed care.