July 23rd, World Sjögren’s Day, is a moment to raise our voices for those living with Sjögren’s Disease – a complex, chronic autoimmune condition that is often misunderstood and underdiagnosed.
This year’s theme, “Awareness Through Research,” reflects our belief that real change begins by listening to patients and turning their experiences into action.
What do the latest findings reveal?
The Spotlight on Sjögren’s study – an international real-world survey supported by Novartis and co-developed with patients – highlights persistent and significant unmet needs:
- Long diagnostic delays – over 4 years for most participants
- Core symptoms like fatigue, dryness, and pain remain poorly addressed
- Low satisfaction with available treatment options
- Severe impact on daily life, mental health, and relationships
These real-world insights reinforce the urgent need for:
- Earlier and more accurate diagnosis
- Therapies that target the root causes of the disease, not just symptoms
- Greater recognition of fatigue, sleep issues, and emotional burden in care plans
- Truly patient-centered care based on shared treatment goals
The study was presented at EULAR 2025, with findings published under two abstracts. Υου can review both abstracts and the patient-friendly leaflet here:
Abstract 761 – Burden of Sjögren’s Disease
Abstract 774 – Treatment Satisfaction and Unmet Needs
At AGORA, we believe that amplifying patient voices through data is not just about awareness – it’s about driving better care, fairer systems, and stronger patient rights across Europe.
Let’s continue to work together – as a community – for a future where no one living with Sjögren’s is left unheard.
The information provided on this webpage is intended for educational and disease awareness purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. The content presented is based on research sponsored by Novartis in collaboration with various partners. Always seek the advice of your physician or other qualified health professionals with any questions you may have regarding a medical condition.