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

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

The Congress, which celebrated its 20^th 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 20^th 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.

16th June 2025/by IPOPI

IPOPI holds EU PID Forum on Shaping the future of research: patients as equal partners

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On 14 May 2025, the International Patient Organisation for Primary Immunodeficiencies (IPOPI) organised a PID Forum titled ‘Shaping the Future of Research: Patients as Equal Partners’. The event took place in Brussels (Belgium) in the European Parliament. It was co-hosted by Member of the European Parliament (MEP) Romana Jerković (S&D, Croatia) and Nicolás González Casares (S&D, Spain).

Martine Pergent, President of IPOPI, moderated the Forum, which aimed at discussing how EU research could benefit from the inclusion and recognition of patient organisations as equal partners.

The speakers of the Forum were the following:

MEP Romana Jerkovic (S&D, Croatia) opened the Forum by highlighting the importance of patients in advancing health research, as experts in understanding rare diseases, research and the complex care pathways.
MEP Nicolás González Casares (S&D, Spain) supported the crucial participation of patients with rare diseases in research, as they are the key to advancing rare disease research. MEP González Casares also highlighted the value of newborn screening as a tool to overcome certain rare diseases early in life.
Johan Prevot, IPOPI Executive Director, highlighted how patients and patient organisations are key players who contribute to ensuring that research can most effectively tackle current unmet needs and that it is fit for purpose. Supranational federations representing specific rare diseases, such as IPOPI, are key players in many research and innovative projects.
Dr Daria Julkowska, Coordinator at the European Rare Diseases Research Alliance (ERDERA), emphasised the importance of patient involvement in rare disease research and also listed a number of challenges that still need to be addressed within the funding programme.
Dr Frank Staal, Recombination Coordinator working at Leiden University Medical Center (the Netherlands), spoke about the value of collaborating with patient organisations for EU funded research projects and spoke about his experience in collaborating with IPOPI on the RECOMB project and the success achieved thanks to their involvement in a series of research projects in the field of PIDs.
Dr Filomeen Haerynck, Paediatric Immunologist at UZ Gent (Belgium), commented on the growing impact of patients’ and patient organisations’ involvement in research over the years.
Christina Kyriakopoulou, Scientific Policy Officer at DG RTD.D.2 of the European Commission, emphasised that no European country could solve the issue of rare diseases alone and that thinking out of the box, flexibility and cooperation between innovators and patient communities were crucial to health research.

The Forum drew a large audience, including delegates from various NMOs: Janine Bastiaans (Board member of the Dutch PID patient organisations), David Jimenez (Board member of the Spanish PID patient organisation, AEDIP) 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 will shortly be available here: https://ipopi.org/our-work/early-diagnosis-and-care/