Proceedings from IPOPI’s 2024 Global Stakeholders Summit Published in Frontiers in Immunology

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The proceedings of the third Global Multi-Stakeholders Summit held by IPOPI on July 1-2, 2024, in Lisbon, Portugal, have been published in Frontiers in Immunology.

The paper entitled “Navigating disruption in the PID landscape: embracing opportunities and anticipating threats in the next ten years” reflects the high-level discussions held over the two-day summit between all participants.

Participants partnered to identify the outlooks, unmet needs, hurdles, and opportunities of primary immunodeficiencies (PIDs) in the next ten years. The proceedings paper provides a review of the current state of the field of immunodeficiency, including therapies and opportunities for gene therapies to offer safe and effective cures. It also examines the role of digital health and artificial intelligence in optimising diagnostics and PID management, as well as personalising treatments, and discusses equitable access to care worldwide. Additionally, it outlines where the field should aim to be in the next 10-20 years in these areas and identifies the practical steps required to achieve these goals.

As a compilation of materials, perspectives, and summaries, this publication is a concise and impactful resource that will help shape the next steps for the PID community.

IPOPI’s Global Multi-Stakeholders Summit is an annual meeting designed to set the stage for a stimulating, forward-thinking discussion among stakeholders on the future priorities of the PID community. The uniqueness of this Summit lies in bringing together a broad range of PID stakeholders in a working format designed to provoke a prospective and multidimensional discussion: physicians (both paediatricians and adult physicians), scientists, clinician-scientists, ethicists, specialists in health economics, patients, and patient representatives from several continents.

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IPOPI Global Survey Highlights Long-Term Impact of COVID-19 on PID Patients

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IPOPI is pleased to share the results of our global survey on the long-term effects of COVID-19 in people living with primary immunodeficiencies (PIDs), now published and available to the public. The paper titled “Long-term effects of COVID-19 in patients with primary immunodeficiency: An IPOPI worldwide survey” was published in The Journal of Allergy and Clinical Immunology (JACI), a high-impact factor journal in the immunology field. Conducted between July and October 2023, this survey would not have been possible without the generous participation of our international PID community. We extend our heartfelt thanks to everyone who took the time to contribute their experiences.

The survey, which collected responses from 1,160 individuals, aimed to assess the prevalence of persistent symptoms after COVID-19, identify risk factors, and understand the broader impact of the pandemic on the health and quality of life of people with PIDs. A significant finding was that 25% of respondents reported ongoing symptoms after recovering from COVID-19, with fatigue, headaches, and nasal issues among the most common.

Participants with persistent symptoms also reported a higher burden across all health categories—systemic, neurological, psychological, and more—compared to those who recovered fully. Risk factors included female sex, asthma, neurological conditions, and certain PID types. Additionally, 30% of those with long COVID symptoms had not cleared the virus within a month. The survey also revealed that quality of life declined during the pandemic for all PID respondents, even among those who had not been infected with COVID-19.

The insights gathered through this community-led effort will help inform healthcare professionals about the unique challenges PID patients continue to face in the aftermath of the pandemic. IPOPI remains committed to ensuring that the voices of patients with PID are heard and reflected in ongoing research and advocacy efforts.

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IPOPI’s 2023 Review of Activities and Achievements

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In 2023, IPOPI made significant strides in improving primary immunodeficiencies (PIDs) care through impactful events, campaigns, and policy efforts, all aligned with our 2021-2025 strategic plan. A major highlight was the record-breaking International Primary Immunodeficiencies Congress (IPIC) in Rotterdam, which attracted nearly 900 attendees and fostered collaboration, advancing clinical care.

Throughout the year, we released a mini-documentary exploring primary and secondary immunodeficiencies, covering important aspects of diagnosis and treatment. Additionally, we published three new educational PID leaflets. We organised key events, including several EU PID Forums in the European Parliament, a successful African and Latin American regional meeting, and a well-attended national meeting in Jakarta, Indonesia.

In addition to these accomplishments, we strengthened our partnerships with global stakeholders, enhancing our collective advocacy efforts. Our work in addressing plasma safety standards and promoting equitable access to essential treatments has laid a solid foundation for future progress. We are committed to continuing our mission of empowering the PID community and driving meaningful change.

We hope you will enjoy reading this annual report, which highlights the most significant IPOPI initiatives, campaigns, and events in the previous year.

Explore the annual review

 

 

 

 

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Global Stakeholders Summit 2023 proceedings

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Charting a course for global progress in PIDs by 2030 — proceedings from the IPOPI global multi-stakeholders’ summit (September 2023)

The IPOPI Global Multi-Stakeholders’ Summit in 2023 marked a pivotal moment for the Primary Immunodeficiency (PID) community, fostering forward-thinking discussions among stakeholders to shape the future priorities of PID care. In this article, we’re excited to share the comprehensive recommendations that emerged from this groundbreaking summit.

From pandemic preparedness to artificial intelligence tools

During the summit, various topics were discussed, including:

  • Personalised patient needs in immunoglobulin (Ig) therapy: This session explored avenues to improve Ig therapy through mechanistic insights and tailored Ig preparations or products according to patient-specific needs and local exposure to infectious agents, amongst others.
  • Pandemic preparedness: Reflections and lessons learned from the COVID-19 pandemic and the threat of antibiotics shortages and increasing antimicrobial resistance emphasized the need for representation of PID patients and other vulnerable populations throughout crisis and care management.
  • Diagnostic opportunities: Discussion also covered the complexities of PID diagnosis, addressing issues such as global diagnostic disparities, the integration of patient-reported outcome measures, and the potential of artificial intelligence to increase PID diagnosis rates and to enhance diagnostic precision.

Experts, physicians, scientists, patients, and representatives from across the globe came together during the summit to discuss the environment for PID patients in the upcoming decade. Through this collaborative effort, we aim to pave the way for improved PID diagnosis and care, by building upon the shared understanding of challenges, opportunities, and scenarios discussed during the summit.

Read the full article here.

This meeting was made possible thanks to the support from CSL Behring, Grifols and Takeda.

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