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.

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IPOPI’s 2022 Review of Activities and Achievements

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2022 was a very special year for IPOPI, as we celebrated our 30th anniversary as an organisation! We had the pleasure of celebrating this milestone at the Global Patients’ Meeting in Gothenburg, Sweden, together with over 100 patient advocates from 34 countries. During this festivity, we seized the opportunity to appreciate current and successive Board and Staff members, who all have played an integral role in shaping IPOPI’s journey. As an organisation, we are proud to work with and represent a growing number of national member organisations who all share our common vision to improve the lives of these patients with primary immunodeficiencies (PIDs).

2022 Highlights: A strong educational programme

In 2022, IPOPI organised various events and engaged in campaigns and policy efforts to improve care for patients with PIDs. Aligned with our strategic plan for 2021-2025, we remained steadfast in delivering a robust educational programme that empowers both patient advocates and healthcare professionals alike. A notable example is the 5th International Primary Immunodeficiency Congress (IPIC), which took place in Vilamoura, Portugal, in April 2022. This congress brought together 600 delegates interested in the diagnosis and clinical care of primary immunodeficiencies (PID), an outstanding achievement!

Throughout the year, we have also released a motion design video series covering primary immunodeficiency diagnosis and treatment, and published six new educational PID leaflets. In addition to this, we organised several EU PID Forums in the European Parliament, as well as a successful Asian regional meeting in Kuala Lumpur (Malaysia), a well-attended national meeting in Bangkok (Thailand), and of course, our Global Patients’ Meeting, organised back to back with the ESID congress.

We have continued our support for stakeholder cooperation in initiatives like Screen4Rare and ERN-Rita and started new collaborations with organisations such as United Nations Institute for Training and Research (UNITAR) and European Alliance for Transformative Therapies (TRANSFORM), among others.

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

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IPOPI’s 2021 Review of Activities and Achievements

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IPOPI’s 2021 Review of Activities and Achievements is now available. 2021 was a busy year for IPOPI, filled with events, campaigns, and policy efforts to improve care for patients with primary immunodeficiencies.

The new strategic plan for 2021–2025 served as a guide to strengthen our educational programme in 2021. Throughout the year, we organised several webinars for PID Clinical Care Education in addition to publishing six new educational PID leaflets and a mini-documentary on PIDs with antiinflammatory and rheumatological crossovers. Additionally, we have maintained our support for stakeholder cooperation in initiatives like Screen4Rare and ERN-Rita. IPOPI was also instrumental in the establishment of International Neonatal Screening Day, taking place annually on June 28.

In addition to this, we have organised several EU PID Forums in the European Parliament as well as three successful regional PID patient meetings in Africa (Hybrid), Latin America (Online) and Asia (Online advocacy workshop). We are proud to work with and represent a growing number of national member organisations who all share our common vision to improve PID patient lives.

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

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