The field of clinical immunology is undergoing a breathtaking, rapid evolution. The borders of our scientific understanding are constantly moving, research projects are multiplying at an unprecedented pace, and clinical and patient expectations are rightfully increasing. Here are some thoughts on how we, as a patient organisation, can navigate this complexity, always with one goal in mind: improving the lives of our patients.

Words matter. There are currently more than 600 primary immunodeficiencies (PIDs), or Inborn Errors of Immunity (IEIs), as many -but not all- of our respected colleagues from the scientific community now prefer. In truth, neither acronym is entirely successful in capturing the complex, modern reality of these diseases. Not all PIDs or IEIs are strictly “primary” or “inborn”, nor are they all classically inherited. However, and importantly, decades of tireless advocacy have written “PID” into pivotal healthcare frameworks. “PID” is the recognised term used in the WHO’s Model Lists of Essential Medicines (EML) and Essential Diagnostics (EDL), at the European Medicines Agency (EMA), and in national regulations and legislations. So, let’s keep PID to drive action, advocacy, and care, whilst IEI is used in research.  

But this clinical complexity goes far beyond words or numbers. We are no longer just discussing general deficiencies; we are defining highly specific, severe manifestations within PIDs: CVID enteropathy, GLILD (Granulomatous-Lymphocytic Interstitial Lung Disease) or aPAP (Autoimmune Pulmonary Alveolar Proteinosis), are some examples. On paper, this level of detail looks like it is making everything more complex. But in truth, it simplifies everything if we accept looking at each patient in a personalised, holistic way. No patient’s journey is linear. While early diagnosis and the rapid initiation of appropriate treatment remain the foundational starting points of our advocacy, they are no longer the finish line. Today, our focus must expand to the unique individual. We must proactively understand their disease trajectory, predict its evolution, and prevent structural, irreversible damage. This proactive approach is necessary if we are to guarantee our patients not just survival, but a better quality of life and smooth, healthy ageing.

A recent publication from a British team examining Bruton’s agammaglobulinaemia (XLA)* offers a compelling illustration of why this longitudinal, personalised vigilance matters so much. Among its findings, the cohort’s health-related quality-of-life analysis showed that XLA patients without bronchiectasis had near-normal quality of life, while those with bronchiectasis had significantly worse physical health and overall well-being. This study proves that if we are to prevent debilitating, long-term complications and ensure our patients age with dignity, we must embrace advanced, preventative clinical.

This evolving clinical reality is precisely what has led IPOPI to broaden its mission to encompass what we call primary immunodeficiencies and “associated diseases”, conditions that compound the burden of the primary immunological disorder. These are not peripheral concerns. In patients, they may be the first sign that something is wrong, presenting long before a classic infectious phenotype raises the suspicion of immune deficiency: autoimmunity, autoinflammation, allergy, malignancies, … They are increasingly recognised as integral dimensions of the PID clinical spectrum, which is no longer characterised by infections only. And beyond PIDs themselves, secondary immunodeficiencies (treatment or disease-related) and the intriguing emerging evidence around somatic mutations potentially coinciding with certain forms of CVID, all demand our collective attention.

The current recognition that the warning signs for immunodeficiencies should be revised and the ongoing efforts to do so reflect this broader understanding. And crucially, they do not only challenge individual clinicians, but they also challenge how hospitals are organised, how specialities interact, and how immunology is positioned within healthcare systems. The warning signs point beyond infections. They point to an integrated, cross-disciplinary vision of immune-mediated disease care that spans haematology, rheumatology, allergology, organ specialities and more. In this context, the importance of recognising clinical immunology as a standalone medical discipline, with the infrastructure, training pathways, and institutional standing that reflect its indispensable role, is a crucial step.

None of this can be achieved by preserving models designed for a different era. The complexity we now face, scientific, organisational, and financial, calls for a strong multidisciplinary consensus, built with all stakeholders: clinicians, patients, researchers, industry, regulators, and critically, payers. The sustainability of care for this growing and increasingly well-characterised population depends on our collective willingness to reset our models and make good use of the technological advances (i.e. AI, genomics) available to us. This is to build new frameworks for diagnosis, treatment access, follow-up, and funding that are simultaneously efficient and equitable for the current and future generations of patients.

IPOPI’s every action is driven by these convictions. We are grateful for the many partners who share this spirit and who work alongside us with the same sense of purpose.

The landscape is moving. We want to move with it, together, and with the patient always at the centre.

* J Hum Immun (2026) 2 (3): e20250198. https://doi.org/10.70962/jhi.20250198

Martine Pergent
IPOPI President