IPOPI at EMA’s 30-Year Scientific Conference

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Juan Garcia Burgos (EMA) and Johan Prévot (IPOPI)

On 25 June 2025, IPOPI proudly took part in the European Medicines Agency (EMA)’s 30th anniversary scientific conference, held at EMA’s headquarters in Amsterdam, the Netherlands. The event marked three decades of groundbreaking achievements in medicines regulation and regulatory science, bringing together key partners and stakeholders to reflect on the past and look towards the future.

The conference gathered representatives from the European institutions and agencies, the European medicines regulatory network, international partners, patient and healthcare professional organisations, industry organisations, the Dutch government, and other esteemed guests. Participants explored the latest trends, innovations, and challenges in the regulation of medicines, as well as public and animal health.

IPOPI was represented by our Executive Director, Johan Prévot. Of particular interest for people living with primary immunodeficiencies (PIDs) and other rare diseases, the meeting was an opportunity to delve into the evolution of regulatory science and discuss how it can continue to advance the development and availability of safe and effective medicines, taking into account disruptive technologies,  the need to keep the public trust in science and a fast moving environment

IPOPI has long been active at the EMA level been and since 2006 formally involved in the EMA’s work, ensuring that the patient voice is considered in regulatory processes and decisions. This longstanding collaboration underscores our commitment to supporting patient-centred regulatory science and improving access to essential treatments.

IPOPI congratulates EMA on its 30 years of dedicated work in safeguarding public and animal health across Europe and beyond. We look forward to continuing our collaboration in the years to come.

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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 speaks at the International Plasma Protein Congress (IPPC) in Warsaw

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The International Plasma Protein Congress (IPPC) was held in Warsaw (Poland) on May 20 – 21, 2025.

The Congress, which celebrated its 20th edition, had a strong presence of IPOPI. Martine Pergent, IPOPI President, shared valuable insights on the vital role immunoglobulin replacement therapies play for persons living with primary immunodeficiencies. Martine further explained how immunoglobulins play a key role for patients in need of these therapies and how many challenges persist for patients: lack of diagnosis, insufficient universal coverage, supply difficulties, partial or complete unavailability in many countries.

Leire Solis, IPOPI health policy and advocacy director, joined session 2 on medical supply chains, prevention of disruption and improving healthcare system resilience. Leire emphasised the critical role of patient organisations and patient engagement in tackling shortages of plasma-derived medicines.

Patient representatives Sian van den Bogaerdt-Rance and Janine Bastiaans (from the Dutch PID patient organisation, SAS), Tolis Topalis (from the Greek PID patient organisation, Galinos) and Juçaíra Giusti (from the Brazilian PID patient organisation, Eu Luto Pela Imuno Brasil) also participated in the Congress and joined the lively discussions during the sessions and networking breaks.

In addition, IPOPI MAP member and esteemed collaborator, Prof Isabelle Meyts, received the Joachim Hilfenhaus Award. Prof Meyts received this recognition for her research activities focused on translational research in PID, focusing on the genetic and functional characterisation of known and novel PID and adenosine deaminase type 2 deficiency.

This 20th edition of IPPC brought together a wide range of stakeholders, including industry, national and European regulators and policy makers and patient representatives, to discuss the evolving landscape of plasma-derived medicinal products. IPOPI is deeply committed to continuing to provide awareness, education and advocacy programmes and support worldwide on the importance of immunoglobulin replacement therapies.

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