IPOPI

How can EU policy better respond to the needs of people living with primary and secondary immunodeficiencies?

At this IPOPI PID Forum, we will bring together policymakers, experts, clinicians, patient representatives and stakeholders to discuss the place of PIDs and SIDs in Europe’s health agenda.

Because rare does not mean invisible — and not-so-rare still deserves attention.

Join us!

The Nordic PID community came together with a clear goal: to regain momentum after the COVID years and rebuild a strong, connected Nordic collaboration.

During the meeting, participants developed a 3-year plan focused on both mission and governance, with shared priorities for the years ahead.

The plan includes common activities and advocacy campaigns to reach a broader audience, while also strengthening connections among members and building an even more supportive community.

IPOPI was pleased to be represented by Alicia Bartos, NMO Programmes Officer for Europe & Asia, supporting this renewed commitment to collaboration, visibility and collective action for people living with PIDs across the Nordic region.

Missed our IPOPI Hard Talks webinar on the diagnosis of autoimmune pulmonary alveolar proteinosis?

Watch the session with Dr Maria Kokosi and Dr Leif Hanitsch as they discuss current diagnostic strategies, key challenges, and ways to reduce misdiagnosis in patients with this respiratory condition.

https://youtu.be/keXol2bHCqE?si=b98a_07Lo-4mdGp1

This webinar was supported by an educational grant from SAVARA.

IPOPI Hard Talks: Diagnosis of Autoimmune Pulmonary Alveolar Proteinosis This IPOPI Hard Talks session focused on the diagnosis of autoimmun...

🌍 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.

The event was attended by Martine Pergent, President of IPOPI, who joined healthcare professionals, researchers, patient advocates, and representatives from across the region in supporting discussions on advancing care and awareness for people living with IEI.

During the opening ceremony, Dr Nizar Mahlaoui, delivered a keynote presentation on “Education and Employment in IEI: A Pathology-Based Approach”, highlighting the challenges faced by people living with Inborn Errors of Immunity (IEI) and the importance of improving access to diagnosis, care, education, and social inclusion.

Alongside the scientific congress, 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 of patient organizations 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 thanks the organizers, including MSPID Moroccan Society for PID, LICIA, and all partners involved, for creating an important platform for education, collaboration, and advocacy.

Join us for the upcoming IPOPI Hard Talks session exploring the diagnosis of autoimmune pulmonary alveolar proteinosis.

This interactive webinar will be moderated by Martine Pergent, IPOPI President, and Dr Nizar Mahlaoui, Chair of IPOPI MAP.

Register now, invite your colleagues and networks, and be part of an important conversation on this challenging topic in PID care.

https://ipopi.org/hard-talks-apap-2026/

Webinar supported by SAVARA.

🎥 In this IPOPI mini documentary, we take a closer look at the world of primary and secondary immunodeficiencies.

Through personal stories and global expert perspectives, the documentary explores the similarities, differences and diagnostic challenges of PIDs and SIDs — including the added complexity of diagnosing primary immunodeficiencies after cancer treatment.

Hear from experts in Spain and Wales, patients in Bolivia and Spain, and gain insights from India on the challenges of diagnosing immunodeficiency patients in low- and middle-income countries.

A global conversation on diagnosis, lived experience and the need for greater awareness.

Watch the mini documentary and learn more:

MINI DOC - «A closer look at Primary and Secondary Immunodeficiencies» In this IPOPI mini documentary, we look closer at the world of prim...

IPOPI is deeply saddened to learn of the passing of Paweł Górniak, President of the Poland Association for Patients with Primary Immunodeficiencies “Immunoprotect”.

Paweł was a dedicated advocate for people living with primary immunodeficiencies and a valued member of the PID community in Poland and beyond. Through his work with Immunoprotect, he contributed to raising awareness, strengthening patient support, and giving a voice to individuals and families affected by PIDs.

His passing is a great loss to his family, friends, colleagues, and to all those who had the privilege of knowing him or working alongside him. His commitment, kindness, and contribution to the PID community will be remembered with deep respect and gratitude.

On behalf of IPOPI, we extend our heartfelt condolences to Paweł’s family, to Immunoprotect, and to the Polish PID community during this very difficult time.

May his legacy continue to inspire the important work carried forward in support of patients and families.

🇧🇪 IPOPI was present at the Pharmaceutical Law Forum, held in Brussels.

The event brought together key influencers shaping European pharmaceutical law, with important discussions on legal and regulatory developments across practice areas critical for organisational success.

With insights from the European Commission, competition authorities, the EMA, and leading pharmaceutical stakeholders, the meeting offered a valuable opportunity to follow developments affecting the future of healthcare, access, innovation and patient communities. 🇪🇺🤝

For IPOPI, engaging in these conversations is essential to ensure that the voice and needs of people living with primary immunodeficiencies remain part of the broader European health policy dialogue.