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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New video series on primary immunodeficiencies

IPOPI is launching a new educational video series on primary immunodeficiencies. With this new series, IPOPI intends to raise awareness of these disorders and encourage discussions about the value of early detection and accessibility to treatment. In recent years, IPOPI has increasingly used videos to foster a better understanding of PIDs among stakeholders and to increase public awareness of PIDs.

The series covers three topics:

Subtitles are available in 10 languages

IPOPI hopes that this educational video series will help raise awareness about the need for improved access to treatment and diagnosis for PID patients. To make them accessible in as many countries as possible, subtitles are available in English, Arabic, Chinese, Danish, Dutch, French, Italian, Portuguese, Romanian and Spanish. Special thanks go to our national member organisations PID Care China, Hajar Morocco, Iris France, IDF Denmark, SAS Netherlands, ARPID Romania and AIP Italy for providing subtitles and enabling more people to benefit from these videos.

This series has been made possible thanks to an unrestrictive grant from Takeda.

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The International Neonatal Screening Day is born!

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IPOPI, in partnership with ISNS and the ESID, announces the launch of the first International Neonatal Screening Day on June 28, 2021.

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