IPOPI White Paper: Advancing Respiratory Care for People with Immunodeficiencies

IPOPI’s new White Paper sets out a European policy framework to address the respiratory health challenges faced by people living with Primary Immunodeficiencies (PIDs), also known as Inborn Errors of Immunity (IEI), and related conditions, including Secondary Immunodeficiencies (SIDs). Building on IPOPI’s 2025 Expert Round Table and a structured 2026 engagement process involving clinicians and experts from around the world, the White Paper puts forward concrete recommendations for European and national decision-makers to improve prevention, diagnosis, treatment and long-term respiratory care.

Respiratory disease remains a major cause of illness and death among people living with PIDs and related conditions. Recurrent infections, chronic inflammation and structural lung damage can reinforce one another, leading to serious complications such as bronchiectasis and interstitial lung disease. Despite these significant risks, patients continue to face diagnostic delays, inequalities in access to appropriate testing and treatment, insufficient multidisciplinary care structures and limited research opportunities.

To address these gaps, the White Paper identifies four key policy priorities: prevention and early diagnosis; delivering adequate care; awareness and patient empowerment; and research and innovation. It calls for actionable measures, including reimbursement policies aligned with clinical practice, routine respiratory monitoring, stronger multidisciplinary care standards, improved transition between paediatric and adult services, and dedicated European support for clinical guidelines, data-sharing and collaborative research. Its ultimate goal is to ensure that respiratory health becomes a stronger priority in European health policy and that people living with PIDs and related conditions receive the timely, coordinated and appropriate care they need.

Members of the European Parliament (MEPs) Kristian Vigenin, Adam Jarubas, Chair of the European Parliament’s Committee on Public Health (SANT), and Dr András T. Kulja have already endorsed the White Paper. Their support to the White Paper is key in spreading the word on how the EU can support cross-border expertise, shared data and coordinated research to ensure that good respiratory care becomes the norm everywhere in the EU.

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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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International Plasma Awareness Week starts now!

During the International Plasma Awareness Week (PAW) 2026, from 5-9 October 2026, IPOPI and its national member organisations around the world are joining the global celebration to recognise and thank the plasma donors whose generosity makes lifesaving medicines possible.

“It all starts with you” is the call to action. Every day, someone donates blood or plasma. Every day, someone else receives a medicine made out this precious resource that helps them live a healthier, fuller life. Although they may never meet, they are connected through one extraordinary act of generosity.

What is plasma?
Plasma is the yellow liquid part of blood, making up about 55% of its total volume. It is composed of approximately 90%-92% water and 8%-10% dissolved substances, including proteins, nutrients, and antibodies that help keep our bodies functioning and protect us from infections.

Donated plasma is used to produce plasma-derived medicines, including immunoglobulins (Ignore). Immunoglobulins replace the antibodies that some people’s bodies cannot produce naturally. For many people living with primary immunodeficiencies (PIDs), Ignore therapy is an essential treatment that helps them fight infections and live healthier, fuller lives. Many life-saving plasma-derived medicines, such as immunoglobulins, cannot be replicated in a laboratory and rely solely on the generosity of blood and plasma donors

There are two ways to donate:
• Plasma donation (plasmapheresis) – only the plasma is collected, and the rest is safely returned to the donor. It yields about 750 ml per session, and, depending on the country, can be done 20 to 104 times a year.
• Blood donation – plasma is separated from a whole blood donation. It yields about 250 ml of plasma and can be done 3 to 6 times a year.

About patients with PID
Around 6 million people worldwide are estimated to live with a primary immunodeficiency, yet 70–90% remain undiagnosed. For those who depend on immunoglobulin therapy, every donation matters. It is estimated that approximately 130 plasma donations through plasmapheresis are needed to provide one year of treatment for one adult living with a primary immunodeficiency. For many people living with PIDs and certain secondary immunodeficiencies (SIDs), immunoglobulin therapy is a lifelong, lifesaving treatment with no alternative. Thanks to awareness and education, and also due to new indications, IG therapy need is rising at a pace of at least 7%, and no biotech alternative is on the horizon in the next 10 years.

Recognising its importance, the World Health Organization (WHO) includes immunoglobulins in its Model List of Essential Medicines for both adults and children with PID.
Alongside encouraging more donations, IPOPI also calls for stronger national and international efforts to increase the regional collection and fractionation of plasma, helping to build a more resilient and sustainable global supply of plasma-derived medicines. Today, many countries rely heavily on imported plasma for these plasma-derived therapies, leaving patients vulnerable to shortages and supply disruptions. A more balanced global plasma collection will help ensure that patients, wherever they live, can access the treatments they need.

About IPAW: The International Plasma Awareness Week is a global campaign that celebrates plasma donors and raises awareness of the importance of plasma donation in producing lifesaving plasma-derived medicines. Learn more at www.plasmaweek.org

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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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