June 22, 2026
The Expert Patients at the Heart of IRIS
Expert patients are people who have learned to live with their chronic illness and engage actively alongside fellow patients. They bring a unique, complementary perspective that no medical training alone can provide.
PIDs are lifelong and complex conditions, demanding coordinated care from family doctors, specialists, nurses, physiotherapists and more. Newly diagnosed patients and their families face enormous uncertainty and have many questions. Someone who has already navigated that journey is a trustworthy ally.
Patient expertise runs through everything IRIS does. The association actively recruits volunteers throughout the year: motivated individuals who support fellow patients, help on solidarity projects and speak about primary immunodeficiencies in their communities. IRIS also equips patients with knowledge through dedicated resources for patients living with PID, video content and quizzes, so that patients can engage with confidence.
This translates into real impact. Recent advocacy has delivered newborn screening for severe combined immunodeficiency, a clarification on home immunoglobulin injections by community nurses, and a reinforced presence at institutional level, including at the Ministry of Health. IRIS patient experts also bring their voice to the international stage, including at IPOPI PID Forum held at the European Parliament. This is expert patient advocacy at its most powerful: informed, organised and engaged.
IRIS demonstrates that when patients are given the tools, the platform and the trust to act, they become essential drivers of progress, for their community and for the healthcare system as a whole.
Learn more at associationiris.org.
