On January 27, 2025, the IPOPI PID Forum brought together a vibrant group of patient advocates, experts, and policymakers to explore how artificial intelligence (AI) can transform healthcare for people with Primary Immunodeficiencies (PIDs) in the European Union. The EU PID Forum on “Understanding AI’s Ability to Transform PID Healthcare” was chaired by the Member of the European Parliament (MEP) András Kulja (EPP, Hungary) and was held at the European Parliament in Brussels (Belgium).

The Forum, moderated by Leire Solis, IPOPI’s Health Policy and Advocacy Director, explored the challenges and opportunities to ensure a patient-centred use of AI, from improving diagnostics to enhancing care and treatment.

The speakers of this Forum were:

• MEP Andras Kulja on the need to ensure that AI is fit for purpose and patient-centred;
• Martine Pergent, IPOPI President, setting the scene and presenting IPOPI’s approach to AI in the healthcare environment;
• Dr Jacques Riviere, a paediatric immunologist from Vall d’Hebron University Hospital, on the use of AI to improve PID diagnosis;
• Dr Helen Leavis, from UMC Utrecht, showcased real-world examples of AI in clinical practice, spotlighting its potential and challenges
• Johan Prevot, IPOPI Executive Director, explained the project which IPOPI is currently developing that uses AI to foster the diagnosis of specific PID.
• Martin Ulbrich, an AI expert from the AI Office of the EU Commission, explains the Commission’s approach to AI;
• Nooshin Amirifar, from CEN-CENELEC, about the Joint Technical Committee 21 on Artificial Intelligence created to harmonise rules on AI throughout the EU while allowing for appropriate representation and effective participation of relevant stakeholders.

There was a full room at the Forum, with representation of several NMOs: Otilia Stanga (President of the Romanian Association for Patients with PIDs, ARPID, and IPOPI treasurer), David Jimenez (Board member of the Spanish PID patient organisation, AEDIP), Dr Eva Varga (Board member of the Hungarian PID patient organisation) and Marie-Sophie Enry-Aude (Board member of the French PID patient organisation, IRIS).

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

The report is available here: https://ipopi.org/wp-content/uploads/2025/02/Event-Report-PID-Forum_Understanding-AIs-Ability-to-Transform-PID-Healthcare-MP.docx.pdf

 

 

From 16-19 October, IPOPI’s XVIII Global Patients’ Meeting (GPM) brought together 100 participants from nearly 50 countries, in Marseille, marking a record number of National Member Organisations (NMOs). Held alongside the European Society for Immunodeficiencies (ESID) and the International Nursing Group for Immunodeficiencies’ (INGID) congresses, this flagship biennial event highlighted collaboration across the primary immunodeficiency (PID) community.

Programme

This meeting featured insightful sessions on mental health, innovative therapies, artificial intelligence and much more. IPOPI introduced two key tools: the “Level Up” Board Game, and a new Toolkit with 25+ practical resources. The programme was well-balanced, combining educational sessions with skill-building workshops to empower attendees with practical tools and strategies to strengthen their organisations. Watch the meeting recap here.

We thank Chiesi, CSL Behring, Takeda, X4, and Biotest support for making this programme possible.

PID Champion Awards

On October 17, the IPOPI community also came together to honour outstanding contributions to the primary immunodeficiency (PID) field through the PID Champion Awards. Watch the highlights from the event here.

• The LeBien Award, honouring outstanding contributions to improving conditions for PID patients worldwide, was awarded to Prof Aziz Bousfiha (Morocco). A long-time IPOPI supporter, he has been instrumental in advancing PID diagnosis and treatment in Africa and beyond.
• The Luciano Vassalli Award, which honours young individuals under 30 who have made a difference in the world of PIDs at the national level, was awarded to David Jimenez Gonzalez from Spain (AEDIP), for his advocacy work and patient support in Spain.
• The B.I.G. Award, celebrating Bold, Innovative and Game-changing projects, saw inspiring NMOs recognised for their impactful work. This year´s winners were:
  • 1st place: PIDPSB, Bangladesh.
  • 2nd place: PID Tsubasa-no-Kai, Japan.
  • 3rd place: AAPPI, Algeria.

Watch the awards video here.

We thank Kedrion for making this event possible with their unconditional grant.

Annual General Meeting – New Executive Committee

During the Annual General Meeting on October 18, IPOPI announced its newly elected Executive Committee for 2024-2028: Cynthia Olotch (Kenya), Roberta Anido (Argentina), Tracy Shaw (USA), and Dimas Adhi Sugiharto (Indonesia). Bruce Lim (Malaysia) was co-opted for the 2024-2026 term.

The GPM 2024 was a remarkable gathering of the global PID community, marked by collaboration, innovation and advancement. We look forward to building on its success in the years to come.

More event photos: Day 1, Day 2, Day 3.