From the President’s desk

Spring: A Season of Resilience, Hope, and Action

Spring is a wonderful season, a time that embodies resilience, hope, and renewed energy. And this year, more than ever, it’s a call to action.

The year began with a heartbreaking shock as we faced the loss of Jose Drabwell, a force of nature known for her unwavering energy and passion. It was almost impossible to believe. Jose, with her incredible vitality, seemed unstoppable. Yet we were forced to accept this painful reality, and in doing so, we also remembered the many patients around the world who share a similar fate, whether despite receiving the best possible care or, tragically, due to a lack of it. In her memory, a generous donation was made, a testament to the profound impact she had on our community. This heartfelt tribute will support our patient programmes and improve lives.

These moments remind us all (patients, healthcare professionals, policymakers and industry) of the urgent need to “see the unseen.” This powerful theme for WPIW2025 calls us to the very core of our mission: advocating for timely, accurate diagnoses and ensuring access to appropriate treatments. WPIW will undoubtedly be a key moment this year, uniting our global community in a shared, coordinated effort. It’s a powerful reminder that everyone plays a vital role in improving patient care.

But we are a resilient community. We turn grief into action and hope, determined not only to remember those we’ve lost but to change the future for those still fighting.

IPOPI is more committed than ever to being where it matters most: close to patients, doctors, and policymakers, working across research, awareness, advocacy, and education. This year, our team will travel the globe, participating in key events and shaping the conversation on PIDs. We will join doctors and patients in Belgrade, celebrate SEAPID’s* 10th anniversary in Bangkok, and organise the first-ever national Patient meeting in Beijing. Our efforts will continue in Casablanca at the ARAPID meeting, followed by speaking engagements at the IPPC conference in Warsaw. We will then head to Nairobi for the ASID-IPOPI meeting. Later in the year, we’ll gather in Budapest for a Central Europe Patient and Doctor event, then organise our LASID-IPOPI meeting in Buenos Aires, and finally, we’ll close the year in Prague at IPIC, our flagship international clinical care congress. Beyond events, we’re also shaping the future. We’ve launched a groundbreaking project to tackle the patient odyssey through Artificial Intelligence and are preparing for our Global Stakeholders’ Summit, our annual forward-looking workshop, designed to anticipate where the field of PIDs and associated diseases will be in the next decade.

It’s a packed and ambitious year, and none of it would be possible without the incredible people who support IPOPI’s work. From patient advocates and medical experts to our valued corporate partners, your commitment and collaboration ensure that patient voices are heard and their needs are prioritised. Before closing, I must mention something truly special. Jose left us one final, extraordinary gift. Her friends and family, honouring her memory, came together to raise funds in her name as a lasting legacy that continues her work. To them, we extend our deepest gratitude.

In this issue, you’ll find more about IPOPI’s latest efforts and the incredible work of our National Member Organisations. Happy reading!

* South-East Asia