From 22 to 29 April, the global community comes together to mark World PI Week – an annual international campaign dedicated to raising awareness of Primary Immunodeficiencies (PIDs). This initiative unites patient organizations, healthcare professionals, policymakers, and the wider public in a shared call to action: work together to improve recognition, diagnosis, and care for people living with these conditions.
World PI Week is more than a moment of awareness—it is a platform for engagement. By joining the conversation, sharing knowledge, and advocating for stronger support systems, we can help ensure earlier diagnoses, better access to effective treatments, and ultimately, improved outcomes for patients worldwide. Collective action is essential to driving the systemic changes needed so that both children and adults with Primary Immunodeficiencies can lead healthier, more fulfilling lives.
Primary Immunodeficiencies encompass a diverse group of more than 550 disorders in which part of the immune system is absent or does not function properly. As a result, affected individuals face increased susceptibility to infections, autoimmune conditions, and other serious health challenges. While some PIs are detected in infancy, many remain unrecognized until later in life—sometimes only after years of persistent and unexplained illness.
This year, the story of one of the most major ESID projects, the ESID Registry, is highlighted in the World PI Week “Before and After Stories” campaign, which showcases tangible examples of how coordinated efforts, innovative initiatives, and policy advancements can transform patient outcomes. These stories demonstrate the powerful impact of collaboration and forward-thinking leadership in improving the lives of those affected by PIs.
The development of the ESID Registry illustrates a critical lesson for the global health community: sharing data can be just as vital as delivering treatment. What began as a fragmented, analogue collection of information has evolved into a robust, coordinated digital network. This transformation was driven by a clear understanding that rare and complex diseases require collective knowledge—no single country can gather sufficient data in isolation.
Through fostering trust and international collaboration, the ESID Registry has significantly enhanced clinical insight into Primary Immunodeficiencies. Its success underscores an important message: by breaking down barriers and working together across borders, we can expand knowledge, improve care, and offer millions of people a better chance at a healthier future.
We encourage everyone to take part in World PI Week by spreading awareness, sharing campaign messages on social media, and engaging with the global community.
To learn more, read the full ESID Registry story
and explore additional campaign materials available on the website.