From the President’s desk

PIDs and … associated conditions.

The field of primary immunodeficiencies (PIDs) has seen remarkable advancements in the ever-expanding universe of medical science. IPOPI is attentive to any developments and tirelessly works to establish PIDs as well-identified conditions within the rare diseases world. Advocating globally for access to timely diagnosis and personalised treatment and management of these conditions, IPOPI remains steadfast in its mission. While infections remain a central challenge for PIDs, these are now recognised as multifaceted conditions associated with autoimmunity, autoinflammation, malignancies, granulomas, allergies, and more.

Moreover, specific secondary immunodeficiencies (SIDs) often reveal an undiagnosed PID, sharing common challenges such as accessing treatments, immunoglobulin therapy, and vaccines. Recognising these crossovers, IPOPI has recently decided to include these associated conditions within the scope of its activities. The inclusion of SID emerged from a 2024 learning expedition, where IPOPI engaged with key stakeholders, including physicians, national member organisations, SID patients, industry partners, and other patient groups. Feedback reinforced the importance of taking this direction. Several commonalities between PIDs and specific SIDs became evident: all these patients face similar challenges ranging from difficulties in accessing treatments such as Ig therapy, vaccination or targeted medicines, and all may benefit from fostering the cooperation between immunology and haematology for the management of such conditions. By broadening its scope to include PID-associated conditions, IPOPI ensures the PID community’s voice remains strong in critical discussions about treatment access and considers its evolving landscape.

IPOPI remains dedicated to representing PIDs worldwide, adopting a flexible approach that respects the unique contexts of its National Member Organisations (NMOs). Each NMO therefore retains the autonomy to decide whether to include associated conditions and some SIDs in their activities. This adaptability ensures that IPOPI’s core mission remains unchanged while positioning the organisation to respond effectively to the evolving landscape of immunological disorders.

Taking this opportunity to wish you all a very Merry Christmas and a Happy New Year!