On April 21, 2025, the IPOPI PID Forum brought together policymakers, clinicians, patient advocates and experts at the European Parliament in Brussels to discuss the evolving needs of people living with Primary Immunodeficiencies (PIDs) as they grow older.

The Forum, titled “Growing older with a PID – Challenges & opportunities in an ageing Europe,” focused on the increasing importance of adapting European health and social systems to support an ageing PID population. The event was chaired by MEP Tomislav Sokol (EPP, Croatia) and MEP Kristian Vigenin (S&D, Bulgaria), and moderated by Leire Solis, IPOPI’s Advocacy and Health Policy Director.

The session opened by highlighting the significant progress made in PID diagnosis and treatment over recent decades, which has led to improved life expectancy for many patients. This positive development also brings new challenges: ensuring that ageing individuals with PID receive appropriate, coordinated and sustainable care throughout their lives. Martine Pergent, IPOPI President, introduced the topic by emphasising the need to integrate elderly PID care into broader EU health and social policy frameworks.

A central part of the event was a panel discussion featuring Francesco Giusti, Policy Officer at the European Commission (DG EMPL, European Commission); Aoife McKeever, Advanced Nurse Practitioner in Immunology (at St James’s Hospital and representative of INGID); Tatu Kulmala, President of the Finnish Immunodeficiency Patients Association (Imppu); Dr Ciprian Jurcut, Internal Medicine and Rheumatology Specialist (Romania); and Marcel Smeets, EU Executive Consultant at the European Ageing Network (EAN).

The panellists explored the implications of increased longevity for PID patients, the need for multidisciplinary and age‑sensitive care pathways, and the importance of ensuring that patient perspectives inform policy development. They also discussed opportunities for cross-sector collaboration to address gaps in elderly care, social support and long-term disease management.

Several IPOPI National Patient Organisations (NMOs) were present at the meeting: Anneli Larsson, from the Swedish PID patient organisation, Silvia Casati, from AIP Onlus (Italy), and Jolien Michiels, from BePOPI (Belgium). They all shared real-life experiences that illustrated the day-to-day challenges faced by older adults living with PID. Their testimonies reinforced the importance of patient‑centred policymaking and the need for EU-level strategies that recognise the specificities of ageing with a rare chronic condition.

IPOPI would like to thank CSL Behring, Grifols and Takeda for their continued support.

The meeting report will be made available soon.