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IPOPI White Paper: Advancing Respiratory Care for People with Immunodeficiencies

IPOPI’s new White Paper sets out a European policy framework to address the respiratory health challenges faced by people living with Primary Immunodeficiencies (PIDs), also known as Inborn Errors of Immunity (IEI), and related conditions, including Secondary Immunodeficiencies (SIDs). Building on IPOPI’s 2025 Expert Round Table and a structured 2026 engagement process involving clinicians and experts from around the world, the White Paper puts forward concrete recommendations for European and national decision-makers to improve prevention, diagnosis, treatment and long-term respiratory care.

Respiratory disease remains a major cause of illness and death among people living with PIDs and related conditions. Recurrent infections, chronic inflammation and structural lung damage can reinforce one another, leading to serious complications such as bronchiectasis and interstitial lung disease. Despite these significant risks, patients continue to face diagnostic delays, inequalities in access to appropriate testing and treatment, insufficient multidisciplinary care structures and limited research opportunities.

To address these gaps, the White Paper identifies four key policy priorities: prevention and early diagnosis; delivering adequate care; awareness and patient empowerment; and research and innovation. It calls for actionable measures, including reimbursement policies aligned with clinical practice, routine respiratory monitoring, stronger multidisciplinary care standards, improved transition between paediatric and adult services, and dedicated European support for clinical guidelines, data-sharing and collaborative research. Its ultimate goal is to ensure that respiratory health becomes a stronger priority in European health policy and that people living with PIDs and related conditions receive the timely, coordinated and appropriate care they need.

Members of the European Parliament (MEPs) Kristian Vigenin, Adam Jarubas, Chair of the European Parliament’s Committee on Public Health (SANT), and Dr András T. Kulja have already endorsed the White Paper. Their support to the White Paper is key in spreading the word on how the EU can support cross-border expertise, shared data and coordinated research to ensure that good respiratory care becomes the norm everywhere in the EU.

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New Frontiers article on PID care in Latin America and the Caribbean

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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?

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