Nordic PID Community Strengthens Collaboration

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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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IPOPI Participates in Moroccan IEI Congress

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IPOPI was proud to participate in the 19th Moroccan Congress on the Predisposition to Infections, Allergies and Autoimmunities and the 10th Maghrebin IVIG Meeting, held in Casablanca, Morocco.

Representing IPOPI, Martine Pergent, President of IPOPI, joined healthcare professionals, researchers, patient advocates and representatives from across the region for important discussions on advancing care and raising awareness for people living with Inborn Errors of Immunity (IEI).

A highlight of the event was the opening ceremony keynote presentation delivered by Dr Nizar Mahlaoui, titled “Education and Employment in IEI: A Pathology-Based Approach.” His presentation shed light on the many challenges faced by people living with IEI and underlined the importance of improving access to diagnosis, care, education and social inclusion.

Alongside the scientific programme, a dedicated patient meeting brought together patients, families, advocacy groups and healthcare professionals to exchange experiences, discuss unmet needs and strengthen collaboration within the IEI community. IPOPI was pleased to contribute to these discussions, reinforcing the essential role that patient organisations play in improving the quality of life of people living with IEI.

Events such as these demonstrate the power of partnership between the medical and patient communities in driving better outcomes and ensuring that the voices of people living with IEI are heard.

IPOPI warmly thanks the organisers, including the Moroccan Society for PID (MSPID), LICIA, and all partners involved, for creating such an important platform for education, collaboration and advocacy.

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