New IPOPI Leaflets

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PLUS hosts annual Stakeholder Consensus Conference

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The Platform of Plasma Users (PLUS) organised its Stakeholder Consensus Conference on January 23-24 in Estoril (Portugal).

The meeting gathered representatives from the following stakeholder organisations: Alpha-1 Belgium, the American Platform of Plasma Users (A-PLUS), the European Blood Alliance (EBA), the European Haemophilia Consortium (EHC), the European Plasma Alliance (EPA), the GBS-CIDP Foundation International, the International Patient Organisation for Primary Immunodeficiencies (IPOPI), the International Plasma and Fractionation Association (IPFA), European Blood Alliance (EBA), Plasma Protein Therapeutics Association (PPTA), World Federation of Haemophilia (WFH),  Marketing Research Bureau (MRB) and Thomas Kluszczynski (ACESO Healthcare Consulting).

During the two-day conference, participants discussed  current priority topics, including:

  • An overview of the latest worldwide plasma and plasma-derived medicinal products supply situation;
  • The role of the Critical Medicines Alliance in Europe and the procurement and supply of PDMPs;
  • Stockpiling in the EU and how this could be applied for PDMPs;
  • The ongoing implementation of the regulation on substances of human origin (SoHO) and the current discussions around the pharma legislation;
  • The importance of ensuring the safety and efficacy of plasma-derived medicines worldwide.

Several elements were identified as shared interests during the discussions, and participants agreed to continue collaborating on that basis. As a result, some organisations agreed to a joint statement on the safety of PDMPs and to further discussions on the developments of the Critical Medicines Alliance from a plasma-derived medicines perspective

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Early Bird Registration is now open for IPIC2025!

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IPOPI is thrilled to open Early Bird registration for the 7th edition of the International Primary Immunodeficiency Congress (IPIC). Join us in Prague, Czech Republic, from November 5-7, 2025, for an exceptional opportunity to engage with global leaders in the field of primary immunodeficiencies. Don’t miss the chance to secure your spot at discounted rates!

IPIC is the leading international scientific meeting focusing on the clinical care of primary immunodeficiencies. At #IPIC2025, prominent international experts in the field will lead dynamic sessions fostering meaningful discussions on the latest advancements.

The programme will cover key topics such as:

  • AI tools in immunodeficiency management
  • Targeted therapies
  • Secondary immunodeficiencies
  • Complex persistent infections
  • Global trends around the world
  • Gene therapy in PID
  • Ethical considerations in genomics
  • Managing hepatic manifestations

Ensure your place at IPIC2025 by registering before the June 30, 2025, Early Bird deadline!

Register with early bird here.

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IPOPI PID Forum Discusses AI Innovations for Patient-Centred Healthcare in the EU

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On January 27, 2025, the IPOPI PID Forum brought together a vibrant group of patient advocates, experts, and policymakers to explore how artificial intelligence (AI) can transform healthcare for people with Primary Immunodeficiencies (PIDs) in the European Union. The EU PID Forum on “Understanding AI’s Ability to Transform PID Healthcare” was chaired by the Member of the European Parliament (MEP) András Kulja (EPP, Hungary) and was held at the European Parliament in Brussels (Belgium).

The Forum, moderated by Leire Solis, IPOPI’s Health Policy and Advocacy Director, explored the challenges and opportunities to ensure a patient-centred use of AI, from improving diagnostics to enhancing care and treatment.

The speakers of this Forum were:

  • MEP Andras Kulja on the need to ensure that AI is fit for purpose and patient-centred;
  • Martine Pergent, IPOPI President, setting the scene and presenting IPOPI’s approach to AI in the healthcare environment;
  • Dr Jacques Riviere, a paediatric immunologist from Vall d’Hebron University Hospital, on the use of AI to improve PID diagnosis;
  • Dr Helen Leavis, from UMC Utrecht, showcased real-world examples of AI in clinical practice, spotlighting its potential and challenges
  • Johan Prevot, IPOPI Executive Director, explained the project which IPOPI is currently developing that uses AI to foster the diagnosis of specific PID.
  • Martin Ulbrich, an AI expert from the AI Office of the EU Commission, explains the Commission’s approach to AI;
  • Nooshin Amirifar, from CEN-CENELEC, about the Joint Technical Committee 21 on Artificial Intelligence created to harmonise rules on AI throughout the EU while allowing for appropriate representation and effective participation of relevant stakeholders.

There was a full room at the Forum, with representation of several NMOs: Otilia Stanga (President of the Romanian Association for Patients with PIDs, ARPID, and IPOPI treasurer), David Jimenez (Board member of the Spanish PID patient organisation, AEDIP), Dr Eva Varga (Board member of the Hungarian PID patient organisation) 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 is available here: https://ipopi.org/wp-content/uploads/2025/02/Event-Report-PID-Forum_Understanding-AIs-Ability-to-Transform-PID-Healthcare-MP.docx.pdf

 

 

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