Primary Immunodeficiencies (PIDs) are a heterogeneous group of over 400 genetic disorders caused by alterations of the immune system. According to recent estimates, approximately 6 million people worldwide live with a PID, but between 70% and 90% are still undiagnosed, facing significant delays in accessing care and profound impacts on their quality of life (1). In fact, data collection was one of the key themes highlighted during World PI Week.
The MAPPA project – Monitoring and Analysis of the Pathways of PAtients with Primary Immunodeficiencies – from the AIP APS (Italian PID Association), in collaboration with Kedrion Biopharma, aims to collect the real, direct and lived experiences of the people who live with a PID every day. Through the collection of concrete data, the goal is to listen to people, understand their needs and transform the information collected into real tools for change. The active participation of patients and their families is the beating heart of this project, born from the belief that the only way to really make a difference is through dialogue and collaboration between associations and companies.
Roberto Crea, Therapeutic Area Lead Immunology, Kedrion Global Medical Affairs, underlined:
“The collaboration between Kedrion and AIP represents a significant step towards a greater understanding of the real needs of patients with PIDs. By collecting quantitative data, MAPPA can offer valuable insights to both patients and healthcare professionals, helping to optimise diagnostic and therapeutic pathways in an increasingly targeted and effective way.”
Launched on 31 March 2025, the MAPPA survey has already collected 165 responses in just over two weeks: 79% from patients and 21% from family members or caregivers. A significant reaction, which highlights the need and desire to be heard. The first results highlight crucial issues: from diagnosis times to therapy management, and from quality of life to the emotional impact of the disease.
Alessandro Segato, President of AIP APS, stated:
“We strongly believe that collaboration between associations and companies can generate concrete changes. The MAPPA project was born from this very concept: collecting real data to voice needs and establish effective responses for patients and their families.”
A preview of the collected data is available at the AIP website.
Kedrion is proud to support projects like MAPPA, which represent a concrete step towards increasingly person-centred medicine.