Our Stories
Patient voices
Our Stories
Real patients, real experiences. These are the voices that drive our mission forward.
Carsten Sørensen
Patient & Treasurer — Denmark
“Starting a patient association can feel overwhelming, but the Federation gives the tools, and the connections so you easily can succeed.”
Carsten was diagnosed with IgG4-RD after years of unexplained symptoms. As a social worker with 20 years of experience from psychiatric and somatic hospitals in Denmark, he brings both personal and professional insight to the Federation.
He co-founded the Danish IgG4-RD patient network and serves as Treasurer of the European Federation, helping to build the structures that allow patients across Europe to connect and advocate together.
Marta Galindo
Patient & Secretary — Spain
“Being part of this network means our patients are no longer invisible. We finally have a collective voice that reaches the European institutions.”
Marta was diagnosed with IgG4-RD and found that very little support existed for Spanish-speaking patients. She became a founding member of the Spanish IgG4-RD association AE-IgG4 and has been instrumental in building the Federation’s multilingual outreach.
As Secretary of the European Federation, she coordinates communication across national associations and ensures every patient’s voice is heard at a European level.
Share your story
Are you a patient or caregiver living with IgG4-RD? We would love to hear from you.
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.
