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IPOPI’s 2025 Review of Activities and Achievements

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Looking back at a year of progress, collaboration and growth, the Review of Activities and Achievements 2025 brings together some of the key moments that shaped IPOPI’s work and the global PID community.

Among the key moments of the year were the success of IPIC2025 in Prague, which brought together more than 900 participants, regional patient meetings in Africa and Latin America, continued advocacy around newborn screening and access to immunoglobulin therapies, and the expansion of IPOPI’s educational and research activities.

The year also brought new initiatives and important developments across different areas of IPOPI’s work, creating new ways to share knowledge, amplify patient voices and support the global PID community.

Discover these and many more highlights in the full report.

Explore the annual review

 

 

 

 

 

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Nordic PID Community Strengthens Collaboration

The Nordic primary immunodeficiency (PID) community recently came together with a clear goal: to regain momentum after the COVID years and rebuild strong Nordic collaboration.

The meeting gave participants a chance to reconnect, discuss shared needs and agree on priorities for the years ahead. It also helped strengthen links between Nordic patient organisations.

A new 3-year plan

One of the main outcomes was a new 3-year plan. The plan focuses on both mission and governance.

This will help the Nordic PID community work in a more structured way. It will also support better coordination between patient organisations in the region.

By setting shared priorities, the group can build a stronger voice for people living with primary immunodeficiencies.

Advocacy and awareness

The plan includes common activities and advocacy campaigns. These aim to reach a wider audience and raise awareness of PIDs.

Awareness is important because many people with PIDs still face delays in diagnosis. Stronger advocacy can help improve understanding of these rare conditions and give more visibility to patient needs.

You can learn more about IPOPI’s advocacy work on the IPOPI Advocacy page.

Building a stronger community

The meeting also focused on community building. Stronger connections between members can help create a more supportive network for people with PIDs and their families.

Patient organisations play an important role in this work. They provide information, support and a sense of belonging.

To learn more about IPOPI’s global network, visit the IPOPI National Member Organisations page.

 

IPOPI was pleased to be represented by Alicia Bartos, NMO Programmes Officer for Europe & Asia.

Her participation supported the group’s renewed focus on collaboration, visibility and collective action. It also reflected IPOPI’s commitment to supporting National Member Organisations and regional cooperation.

The new 3-year plan marks an important step forward. It shows a shared commitment to stronger collaboration, better advocacy and a more connected Nordic PID community.

 

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