Because infectious diseases are a major source of morbidity and mortality in the majority of patients with primary immunodeficiencies (PIDs), the application of a prophylactic regimen is often necessary. However, given the variety of PIDs and pathogens involved, and because evidence is scarce, practices are heterogeneous. To homogenize practices, the French National Reference Centre for PIDs (CEREDIH) has elaborated recommendations for anti-infectious prophylaxis for the most common PIDs. These recommendations were the subject of an article “Prevention of Infections during Primary Immunodeficiencies” which can be accessed here.

IPOPI is now a member of Health First Europe (HFE). As a follow-up from the participation in HFE’s General Assembly IPOPI requested membership to this alliance of patients, healthcare workers, academics and healthcare experts and the medical technology industry. As a patient organization, IPOPI will bring a first-hand insight of what are the key policy issues for patients suffering from PIDs, such as: the need for investing in prevention and adequate care in order to ensure sustainable healthcare systems, newborn screening or health technology assessment.