History of the Federation
How a group of patients from across Europe came together to advocate for change.
What Drives Us Forward
The European Federation for IgG4-RD works to improve awareness and understanding across Europe.
By bringing together patients, doctors, and researchers, we create a strong network that shares knowledge and supports better outcomes.
Our Mission
To improve health outcomes by raising awareness, sharing the newest knowledge and treatment options, and giving patients a collective voice in Europe.
Our Vision
A Europe where every IgG4-RD patient has access to timely diagnosis, effective treatment, and a supportive community.
Federation Board & Medical Advisory Board
Our federation is led by a dedicated board of patients from across Europe. Our Medical Advisory Board vets any publication relating to the symptoms, diagnosis, treatment and outlook of the disease.
Federation Board
Leading patient advocacy across Europe
Medical Board
Expert clinical guidance and current science
Founded in Barcelona, registered in Brussels
The federation was founded following a meeting of founding patients in Barcelona, España on June 5, 2025. It was officially created in Brussels, Belgium in August 2025.
The founders felt that a federation would help patients to come out of their isolation. They were also convinced that more advocacy was needed to improve diagnosis and treatment of the disease — and this more research is needed into the outlook for patients and their quality of life.
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June 5, 2025
Founding meeting — Barcelona, España
Seven founding patients from across Europe meet and establish the Federation.
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August 2025
Official registration — Brussels, Belgium
The European Federation IgG4-RD is officially registered as a non-profit organisation.
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May 21, 2026
Official launch of house style, website and social media
Today, 21 May 2026, the European Federation of igG4-RD patients launched publicly, showcasing the stunning specifically designed house style, that joins the Human aspect of patients to the medical world. The Federative website is www.igg4.eu.
The logo and Iggy
The chosen logo for the federation is based on the IgG4 molecule. While it shares the general ‘Y’ shape of other IgG antibodies, its functional uniqueness stems from its huge region and its ability to act as a bispecific molecule.
The two sides of the ‘Y’ represent the patient’s real life and the medical reality — and the federation is here to bridge that divide. Iggy our mascot is also based on our molecule.
The 'Y' shape of the antibody is unique — bridging the divide between research and lived experience.
Carsten Sørensen
Patient & Treasurer, Denmark
As a co-founder and chair of the federation, I am proud to lead a community advocating for better recognition and care for IgG4-RD.
About the European Federation IgG4-RD
We are the bridge between you, the patient, be it as a direct member or through your own national association and the medical world and wider community. We connect knowledge, compassion, and advocacy across Europe for those affected by IgG4-Related Disease.
