From the President’s desk

We live in a world that often feels difficult to read. Between the complexities of geopolitics, the reality of climate change, and the dizzying pace of technological disruption, “uncertainty” has become the defining characteristic of our era. However, at IPOPI, we believe that uncertainty should never be our guide. Instead, we choose to view it as a space of freedom, a perspective from which we can question old beliefs, envision new options, and think outside the box. This is the spirit we bring to our yearly Global Stakeholders Summits, where we turn collective challenges into collaborative solutions and plans.

As we look towards 2026 and begin implementing our new Strategic Plan for 2026–2030, we do so with unwavering determination. While some might ask, “Why do we aim so high when the world changes so rapidly?”, our answer is simple: our mission is, and always will be, the achievement of better lives for the patients we represent.

We look to the future with genuine enthusiasm because we have no nostalgia for a past where patients had far fewer options for both diagnosis and treatment. Today, we are moving into an era of unprecedented possibility.

And we can bear witness to this, not just in our own work, but in the remarkable momentum across the globe. Everywhere we look, we see a community refusing to stand still, and our reach is expanding further than ever before. We are currently seeing a dynamic surge in activity across the globe, on many of the topics we are actively working on.

• We are watching the inspiring growth in the number of National Member Organisations (NMOs), strengthening the global patient voice and working to see patients’ rights come true at a national level, making our conditions not only known but acknowledged as worth treating.
• We are amazed by the incredible density and diversity of international research projects to which we are associated as expert Patients: From tackling specific symptoms to exploring cutting-edge treatments like gene therapies, cell therapies, or CAR-T, addressing rare or ultra-rare conditions, all increasingly supported by dynamic, AI-driven applications. All raising hope for a better future.
• We are happy to take part in the crucial development of the new patient registry taking root in Africa and witness other ones arising in Southeast Asia or the Middle East.
• In response to the growing global demand for plasma, we are strengthening our efforts, notably in light of the 2027 implementation of the SoHo legislation. Our global focus is on advancing patient-centred policies and promoting plasmapheresis as the primary collection method to ensure a stable, high-quality supply of the raw materials needed for life-saving therapies. Furthermore, we look forward to further building on our collaboration with UNITAR, whose initiatives we strongly commend as a powerful model for public-private partnerships. IPOPI strongly believes such partnerships are essential to addressing the urgent needs of patients whose lives and well-being are dependent on a steady supply of plasma-derived medicinal products.
• Our continued efforts, jointly with Screen4Rare, to promote newborn screening for SCIDs as a cost-efficient way to allow patients with rare treatable diseases to directly access diagnosis are now becoming global. We see newborn screening for SCIDs becoming a priority, with exciting new considerations and advancements emerging across Latin America and Asia.

While we remain rational and resilient in our planning, we are deeply affected by the world’s pain. We stand in solidarity with those of our community who suffer from the effects of wars, economic instability, or ecological crises. We know all too well that our patients often carry a “double burden”: the challenge of their condition compounded by the volatility of their environment.

This edition of our newsletter is a testimony to the fact that our community’s actions are more vibrant than ever! From our national member organisations (NMOs) to our international partners, the drive to improve the lives of PID patients has never been stronger.

Thank you for being part of this journey. We hope you enjoy the read.