How can Europe better support people living with primary and secondary immunodeficiencies?
This was the central question at the PID Forum: “Rare and Not-So-Rare: Shaping EU Policy for PIDs & SIDs”, held at the European Parliament on 23 June.
Hosted by MEP Romana Jerković (S&D, Croatia), the Forum brought together policymakers, healthcare professionals, and patient advocates to discuss key priorities for improving the lives of people living with primary and secondary immunodeficiencies across Europe. The discussions centred on five key pillars:
🔹 Strengthening early and accurate diagnosis across Europe
🔹 Ensuring equitable and sustained access to treatments
🔹 Bridging rare disease and cancer policy frameworks
🔹 Addressing psychological and social stigma
🔹 Securing sustainable EU health financing
The Forum brought together a distinguished panel of speakers, including Martine Pergent (IPOPI President), Prof Tadej Avcin (University Children’s Hospital Ljubljana), Dr Elena Cabezudo (Hospital Vithas Barcelona), Prof Filomeen Haerynck (UZ Gent), Felice Bombaci (CLL Advocates Network), Anne-Sophie Henry-Eude (Patient Representative) and Sarita Workman (INGID).
The discussions also included contributions from Claudia Koreimann (National Expert at the Directorate-General for Parliamentary Research Services) and Mariana Dates (Principal Consultant at Tetra Tech), who shared their perspectives on bridging EU policy gaps for secondary immunodeficiencies.
A special thank you to our NMOs and patient representatives for ensuring that patient voices remained at the heart of the discussion, with valuable contributions from Soraja Ebbeling (the Netherlands), Ewa Kapuścińska (Poland), and Tina Volcjak (Slovenia).
Moderated by Leire Solis Garate (IPOPI’s Health Policy and Advocacy Director), the Forum fostered a valuable exchange on how European policy can better address the needs of people living with immunodeficiencies.
A big thank you to MEP Jerković, our speakers, NMOs, and all participants for helping advance the policy agenda for PIDs and SIDs in Europe.
