Global Patients’ Meeting 2026: Connecting the PID Community

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From 14–16 October, IPOPI welcomed 89 participants from 51 countries to its Global Patients’ Meeting (GPM) 2026 in Maastricht, the Netherlands. Taking place alongside the ESID Congress, the meeting brought together the global PID community for three days of learning, shared experiences and collaboration.

Programme

This year’s programme covered key topics including gastrointestinal and respiratory health, access to treatment, plasma and immunoglobulin therapies, physical and mental health, early diagnosis, PIDs and SIDs, and advanced therapies. Sessions also explored patient-centred research, genetic testing and the role of patient organisations.

The meeting combined expert-led lectures, interactive discussions and practical workshops. Highlights included the NMO Marketplace, where organisations shared their projects and initiatives, and the Medical Advisory Panel (MAP) Speed-dating, offering opportunities to engage directly with medical experts.

PID Champion Awards

On the 15th of October, 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 Charlotte Cunningham – Rundles (USA).
  • 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 Tainá Bianchi Lisboa (ELPIB).
  • 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:

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

Annual General Meeting – New Executive Committee

During the Annual General Meeting on 16 October 2026, IPOPI announced the newly elected Executive Committee members for the 2026–2030 term: Whitney Ayoub Goulstone (Canada), Bruce Lim (Malaysia), and Otilia Stanga (Romania). Additionally, Martine Pergent (France) and Sergio Zeno Vicentini (Italy) were appointed as co-opted Executive Committee members for the 2026–2028 term.

The GPM 2026 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.

Watch the event videos: Day 1, Day 2, Day 3.

These three days highlighted the value of collaboration and the strength of the global PID community.

 

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Meet the new board

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IPOPI’s National Member Organisations recently elected the new IPOPI Executive Committee, and the results were announced during the Annual General Assembly at the Global Patients’ Meeting on the 16th of October, 2026, in Maastricht.

Congratulations to Whitney Ayoub Goulstone (Canada), Bruce Lim (Malaysia) and Otilia Stanga (Romania) on being elected to the Executive Committee for the 2026-2030 term. Additionally, we congratulate Martine Pergent (France) and Sergio Zeno Vicentini (Italy) on becoming co-opted Executive Committee Members for the 2026-2028 term. 

IPOPI’s Executive Committee Members:

  • Martine Pergent (Chair) – France – Immuno-Deficience Primitive: Recherche, Information, Soutien (IRIS)
  • Bruce Lim (Vice-Chair) – Malaysia – Malaysia Patient Organization of Primary Immunodeficiencies (MyPOPI)
  • Otilia Stanga (Treasurer) – Romania – Romanian Association for Patients with Primary Immunodeficiencies (ARPID)
  • Tracy Shaw – USA – Immune Deficiency Foundation (IDF)
  • Whitney Ayoub – Canada – ImmUnity Canada
  • Dimas Adhi Sugiharto – Indonesia – Perhimpunan Pasien Imunodefisiensi Primer Indonesia (PPIPI)
  • Cynthia Olotch – Kenya – PIDs Kenya
  • Roberta Anido – Argentina – Asociación Ayuda al Paciente con Inmunodeficiencia Primaria (AAPIDP)
  • Sergio Zeno Vicentini – Italy –  Associazione Immunodeficienze Primitive (AIP)

Together, this diverse and talented team will work to foster global collaboration, promote advocacy, and ensure our organisation continues to meet the needs of PID patients worldwide. We look forward to their leadership and the positive impact they will bring!

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IPIC2025 Congress Report and Impact

With over 900 attendees from 70 countries, IPIC2025 was a truly inspiring gathering of the global primary immunodeficiency community, bringing together leading experts, clinicians, nurses, patient representatives, industry partners, and other stakeholders committed to improving patient care.  Held in Prague, Czech Republic, from 5-7 November 2025, the congress featured a patient-centred scientific programme focused on innovation, clinical practice, ethics, collaboration, and advances in the diagnosis and treatment of primary immunodeficiencies and associated conditions.

We are pleased to announce that the IPIC2025 Congress Report is now available, capturing the key scientific discussions, insights, and outcomes from the congress.  The report highlights the global commitment to improving diagnosis and care, the importance of integrating scientific advances with ethical and clinical considerations, and the role of international collaboration in driving progress for patients worldwide.

The congress’s impact continues beyond the event itself.  A paper titled “Ethical and Clinical Boundaries in Genomics & Newborn Screening“ has now been published based on Session 7 from IPIC2025: “Ethics Session – Philosophical and Ethical Considerations of Clinical Boundaries in Genomics”. The article explores the ethical challenges that can arise when newborn screening programmes detect serious genetic conditions that were not the original target of testing.  Using the example of ataxia-telangiectasia identified through screening for severe combined immunodeficiency (SCID), the paper examines important questions around early diagnosis, informed consent, the management of incidental findings, and support for families.  It highlights the need for internationally coordinated approaches as genomic technologies become increasingly integrated into routine healthcare.

Together, the Congress Report and this peer-reviewed paper demonstrate how IPIC2025 continues to foster knowledge sharing, stimulate important discussions, and advance patient-centred care worldwide.

As we close this remarkable chapter, we are already looking ahead with excitement to our next congress: IPIC2027, taking place in beautiful Mallorca, Spain, from November 3–5, 2027.

 

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IPOPI launches policy recommendations to strengthen EU action on PIDs and SIDs

IPOPI has launched its policy recommendations, “When Rare Meets the Not-So-Rare: Strengthening EU Action on Primary and Secondary Immunodeficiencies”, calling for stronger European action to improve diagnosis, treatment and care for people living with primary immunodeficiencies (PIDs) and secondary immunodeficiencies (SIDs).

The recommendations identify five key areas for action: strengthening early and accurate diagnosis; ensuring equitable and sustained access to treatment; bridging rare disease and cancer policy frameworks; addressing the psychological and social impact of immunodeficiencies; and strengthening EU research, training and data collaboration.

The recommendations build on discussions held during IPOPI’s PID Forum, “Rare and Not-So-Rare: Shaping EU Policy for Primary and Secondary Immunodeficiencies”, which took place at the European Parliament in Brussels (Belgium) on 23 June 2026. Hosted by MEP Romana Jerković (S&D, Croatia) and moderated by Leire Solis, IPOPI’s Health Policy and Advocacy Director, the Forum brought together policymakers, healthcare professionals and patient representatives to discuss how European policies can better address the needs of people living with PIDs and SIDs. Martine Pergent, IPOPI President, introduced the policy priorities and emphasised the need for a coordinated approach that connects rare disease and cancer policies.

The PID Forum counted with a range of varied experts:

  • Anne-Sophie Henry-Eude, patient advocate and IPOPI representative, shared her experience of receiving a PID diagnosis in adulthood following autoimmune disease and cancer and highlighted the importance of coordinated care and psychological support.
  • Filomeen Haerynck, paediatric immunologist at UZ Ghent, Belgium, discussed the challenges of diagnosing PIDs and the need to improve awareness among healthcare professionals across different specialities.
  • Dr Tadej Avčin, from the Department of Allergology, Rheumatology and Clinical Immunology at University Children’s Hospital Ljubljana, Slovenia, contributed his clinical expertise on immunodeficiencies.
  • Dr Elena Cabezudo Pérez, haematology specialist at Institut Català d’Oncologia–Hospital Moisès Broggi in Barcelona, Spain, brought the haematology perspective to the discussion.
  • Felice Bombaci, member of the Steering Committee of the CLL Advocates Network, who shared the perspective of people affected by haematological malignancies.
  • Sarita Workman, senior clinical specialist nurse at East Kent Hospitals University NHS Foundation Trust, United Kingdom, and INGID Board Member, contributed the nursing perspective.

The discussion also included contributions from MEP Dr Jerković on bridging gaps in EU policy for SIDs, alongside closing remarks from Claudia Koreimann-Özkan, National Expert at the Directorate-General for Parliamentary Research Services; Mariana Dates, Principal Consultant at Tetra Tech.

There was a big representation from national member organisations (NMOs) with: Ewa Kapuscinska from the Polish Association for Patients with Primary Immunodeficiencies (Immunoprotect), Tina Volcjak from the Slovenian Society for Immune Disorders and Soraja Ebbeling from the Netherlands Foundation for Immunodeficiencies (Stichting voor Afweerstoornissen).

IPOPI hopes that these recommendations will support engagement with European policymakers and contribute to a more coordinated European approach to the needs of people living with PIDs and SIDs.

Find out more:

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

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Jose Drabwell Research Grant Programme Winners

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The IPOPI Jose Drabwell Research Grant Programme is an initiative aimed at promoting scientific and clinical research in the field of primary immunodeficiencies and associated conditions.

The third grant call in 2026, supported by Grifols and Kedrion, ran from June to August, inviting applicants from around the world to seize the opportunity to fuel innovation in the field with patient-centred and knowledge-generating projects.

IPOPI is pleased to announce the winners of the IPOPI Jose Drabwell Research Grant Programme 2026. The winners will receive funding for 2 years to carry out the following projects:

 

  • Dr Narissara Suratannon

Affiliation: Center of Excellence for Allergy and Clinical Immunology, Division of Allergy and Immunology, Department of Pediatrics, Faculty of Medicine, Chulalongkorn University, and the King Chulalongkorn Memorial Hospital, the Thai Red Cross Society, Bangkok, Thailand

Project Title: Establishing a Southeast Asian Gene Therapy Hub for Inborn Errors of Immunity Using RAG1-SCID as a Pioneering Program

📌 This project will develop a regional readiness and implementation roadmap for RAG1-SCID gene therapy in Southeast Asia, including technology transfer, training, and the establishment of a centralised treatment hub in Bangkok.

 

  • Dr Jolan Walter

Affiliation: University of South Florida, United States of America

Project Title: Serum biomarkers of immune dysregulation to assess disease state in monogenic combined immunodeficiencies: from research to patient education

🔬 This project will develop and validate blood-based immune biomarkers and a patient-centred risk score to predict disease deterioration in people with monogenic combined immunodeficiencies (G-CIDs), while improving patient understanding of biomarker monitoring and multiomics research.

 

  • Dr Katie Townsend

Affiliation: University College London, United Kingdom

Project Title: Integrating B-cell functional assays to improve the diagnosis of primary Predominantly Antibody Deficiencies

🌍 This project will develop a standardised B-cell functional testing platform to improve diagnosis and interpretation of genetic variants in patients with predominantly antibody deficiencies, including those without a confirmed genetic diagnosis.

 

We wish the winners the best of luck and success on these projects and would like to thank everyone who applied.

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