IPOPI and leading clinicians and researchers have published a new article providing a regional perspective on the situation for people living with primary immunodeficiencies (PIDs) across Latin America and the Caribbean.

Published on 24 September 2026 in Frontiers in Immunology, the article, “Appraisal of primary immunodeficiencies in Latin America and the Caribbean using the IPOPI PID Life Index – where are we now?”, brings together IPOPI expertise and the perspectives of key opinion leaders working in the field of primary immunodeficiencies.

Taking a closer look at PID care across the region

The publication uses data from the IPOPI PID Life Index, an interactive tool developed to assess the implementation of the PID Principles of Care around the world.

For this regional analysis, the authors examined the situation across 13 countries in Latin America and the Caribbean, looking at six fundamental areas of PID care: diagnosis, treatment availability, universal health coverage, specialised centres, national patient organisations and registries.

The article provides an important overview of the progress that has been made while also examining the differences that continue to exist between countries in access to diagnosis, treatments and specialised care. The authors highlight the importance of sustained collaboration between healthcare professionals, patient organisations and other stakeholders to continue strengthening the environment for people living with PIDs.

From regional dialogue to scientific publication

The publication also builds on discussions held during the IPOPI Latin American Regional Meeting in Buenos Aires in October 2025, where patient representatives shared their national experiences, identified common priorities and discussed actions needed to improve access to diagnosis and care.

These discussions, combined with information collected through the PID Life Index, helped shape this first regional assessment of the implementation of the PID Principles of Care in Latin America and the Caribbean.

For IPOPI, bringing patient perspectives together with clinical and scientific expertise is essential to building a clearer picture of the realities faced by people living with PIDs and supporting evidence-based improvements in care.

Strengthening knowledge through collaboration

This article was developed in close collaboration with Prof Adli Ali, Prof Antonio Condino-Neto, Dr Nizar Mahlaoui, Dr Lorena Regairaz, Dr Silvia Sánchez-Ramón, Dr Carolina Prando and Prof Cecilia Poli.

We would like to extend our heartfelt thanks to all our collaborators for their swift, constructive and highly productive collaboration, which made this work possible.

Its publication represents another important step in IPOPI’s work to strengthen knowledge of the global PID healthcare environment and to support collaboration between the patient and medical communities.

Read the full open-access article in Frontiers in Immunology:
Appraisal of primary immunodeficiencies in Latin America and the Caribbean using the IPOPI PID Life Index – where are we now?