From the President’s desk

Recently, a colleague facing a rare cancer shared with us: “I now fully appreciate the value of leaflets made by and for patients. I found important information about my condition, including that, if my treatment doesn’t work, I may need to look for a clinical trial.”

These touching words resonated deeply with us and, we believe, will do so with many of our colleagues and stakeholders, including our corporate partners. They are a vivid reminder of why we do what we do. Behind every educational tool or awareness campaign lies a fundamental goal: to empower patients with knowledge, to support families in moments of uncertainty, and to build bridges between patients and the healthcare professionals who care for them.

These resources are more than just materials; they are lifelines offering clarity, hope, and direction. Testimonies like this one reaffirm our conviction: awareness, education, and advocacy are essential for patients and caregivers navigating complex health challenges. Essential for the healthcare community seeking to provide timely and tailored support. And essential for shaping a system where patients are not passive recipients, but informed and active participants in their care. This is why we continue to make sure to bring the patient voice where it matters.

Recently, we held a PID Forum at the European Parliament, where we shared with regulators and policymakers the vital need for greater investment in research, whether basic or translational. We also called for the inclusion of patient representatives as true and equal partners in research, and for a regulatory and legal context that encourages it. When we bring together diverse forms of expertise or experience, something powerful happens. As one patient movingly told us: “Research gives me hope: if not for me, for others. I want to make sure no one else goes through what I have experienced.”

Education is a cornerstone of this effort. It allows patients to become genuine partners, especially in chronic and rare diseases, where information can be scarce and fragmented. At IPOPI, we are committed to producing educational tools tailored to the needs of both patients and healthcare professionals: leaflets, “hard talks”, mini-documentaries, and soon, podcasts, even on topics that may be “niche” but are of vital importance to those who are concerned. These global resources are reinforced by regional meetings: soon in Africa, later in the year in Eastern-Central Europe, and Latin America, not only to share knowledge, but to build skills that empower our members to meet their own national challenges, grounded in their local realities. Of course, IPIC will then address clinicians, with the constant concern that the progress of research reaches the patient’s “bedside”.

When it comes to awareness, I want to warmly thank our National Member Organisations (NMOs) for their outstanding efforts during World PI Week. You have helped the world make people living with Primary Immunodeficiencies visible, making this annual milestone resonate far, wide and clear. Of course, this week is only part of the story, your ongoing, year-round advocacy in each of your countries is what truly drives change.

To conclude, I want to express my deepest gratitude to all patients and families committed in national member organisations for their courage, their strength and their initiatives. At IPOPI, action is at the heart of our mission, and we are inspired each time we witness a patient somewhere in the world take control of their journey, gather with others and succeed in creating change. That’s what progress looks like, and that’s what keeps us moving forward together. But please, read more about this in this issue of e-news.

Happy reading!