Sjögren Europe launches “Nobody Listens” campaign for World Sjögren’s Day

Ahead of World Sjögren’s Day on July 23, Sjögren Europe is spotlighting the hidden daily impact of Sjögren disease with a July campaign centered on patient disbelief and delayed diagnosis. The group is pressing clinicians, policymakers, employers and families to take symptoms seriously and support earlier care.

Why it matters: - Sjögren disease can be hard to recognize because many of its most disruptive symptoms are invisible. - The campaign argues that disbelief can delay diagnosis, worsen damage and leave patients without support for work, family life, mental health and finances. - Sjögren Europe is using World Sjögren’s Day to push for earlier recognition and more effective care for a disease that currently has no single approved treatment.

What happened: - Sjögren Europe launched its Europe-wide “Nobody Listens” campaign ahead of World Sjögren’s Day on July 23. - The campaign runs throughout July and continues through July 31. - The effort centers on real patient experiences shared across Europe under #NobodyListens. - Sjögren Europe says the campaign highlights a recurring patient complaint: symptoms are often not taken seriously and experiences are not believed.

The details: - Sjögren disease is a chronic autoimmune condition in which the immune system attacks moisture-producing glands and can also affect other organs and systems. - The disease is often linked to dry eyes and dry mouth, but symptoms can also include debilitating fatigue, joint and muscle pain, nerve pain, dysautonomia, cognitive difficulties or “brain fog,” and dryness in other parts of the body. - In some cases, the lungs, kidneys, nervous system or lymphatic system may be involved, with a serious increased risk of lymphoma. - Women account for about nine in 10 diagnosed cases. - Diagnosis can take several years. - The 2026 international patient study Spotlight on Sjögren’s: A Patient Perspective on Burden of Disease found most participants had symptoms for more than five years before diagnosis, with even longer delays in some countries. - The campaign uses patient testimonies and plain phrases such as “my belly hurts” and “I’m just tired” to show how ordinary language can hide the severity of the illness. - Sjögren Europe says the disease is systemic, serious, progressive, disabling, complex, heterogeneous and unpredictable. - The group is sharing patient testimonies, campaign messages and awareness materials throughout July with #NobodyListens and #WorldSjogrensDay. - Sjögren Europe is based in Gland, Switzerland, and was founded in February 2019. - The federation represents national patient associations for people living with Sjögren disease. - Its mission is to increase visibility, attention and solutions through knowledge, research, information, treatment, care and patient involvement in decision-making.

Between the lines: - The campaign is aimed as much at recognition as at education. - By focusing on disbelief, Sjögren Europe is framing diagnosis and care as a listening problem, not just a medical knowledge problem. - The message also broadens the issue beyond healthcare, linking symptoms to employment, family responsibilities, social life and financial security. - The push for earlier diagnosis reflects a concern that delayed recognition can lead to irreversible damage.

What's next: - Sjögren Europe will continue campaign activity through July 31. - The group is urging healthcare professionals to listen closely to patient-reported symptoms and recognize the systemic nature of the disease. - Policymakers and health systems are being pressed to address the full impact of Sjögren disease and support progress toward an effective approved treatment. - Employers are being asked to better accommodate people with fluctuating and invisible symptoms. - Families, friends and the public are being encouraged to believe patients when they describe the impact of the disease.

The bottom line: - Sjögren Europe is using World Sjögren’s Day to turn a visibility problem into a call for faster diagnosis, better support and fewer missed warnings.