From the President’s desk

At IPOPI, we believe that our National Member Organisations (NMOs) are the cornerstone of our vision: a world where every person living with a Primary Immunodeficiency (PID) or associated condition can be diagnosed early, have access to personalised treatment, and live a full, meaningful life.

Today, IPOPI proudly counts 78 member organisations around the globe. Our two most recent members, Ghana and Guatemala, stand as inspiring examples of the growing awareness of PIDs and the collective progress we are achieving together. Each new member represents another step toward making sure that no patient, wherever they live, is left behind.

Our vision of membership is a true partnership, a win-win relationship. One of IPOPI’s key roles is to help each national organisation find its own path to improving the quality of life for PID patients within its specific health, social, and political context. We do this by developing tools and capacity-building programmes that help our members shape their national strategies, engage key stakeholders, and promote patient-centred research, treatment, care, and policies.

One key ingredient for success is speaking with a strong and coherent voice. Although PIDs are not as rare as once thought, they still represent smaller populations compared to more common diseases. This makes it even more essential to unite under a single, representative national organisation, one that can advocate effectively for all patients, children and adults alike, and ensure equal access to care, even in the most remote areas.

Our regional meetings (like those held this year in Africa, Central and Eastern Europe, and Latin America) play a vivid and essential role in our activities. They are moments of connection, learning, and empowerment. Looking ahead, next year’s Global Patient Meeting in Maastricht will be a true momentum for our global family, a unique opportunity to celebrate our shared achievements, exchange best practices, and reaffirm our collective commitment to improving the lives of people with PIDs worldwide.

Ultimately, our shared goal is to create a virtuous circle: diagnosis through empowered healthcare professionals, access to effective treatment and care, and the opportunity for every patient to live fully: to study, work, have a social life, start a family, and age with dignity while having their comorbidities properly recognised and managed. This holistic vision can only be achieved through the dedicated work of patient organisations in collaboration with other stakeholders. They are the ones who understand the journey best, who connect the dots between patients, clinicians, policymakers, and society at large.

We want to express our heartfelt thanks to all those who make this possible: our NMO leaders for their tireless commitment, the physicians and nurses for their expertise and compassion, the policy makers who enable progress, the partners from industry for their continued support, and all the experts who contribute to our shared ecosystem of patient centricity.

Together, as one strong global community, we continue to turn vision into action, ensuring that every person living with a PID, no matter where they are born, can thrive.