World Sjögren’s Day 2026: 'Nobody Listens' Campaign Confronts Disbelief
Sjögren Europe’s “Nobody Listens” campaign for World Sjögren’s Day 2026 highlights the invisible and often misunderstood impact of Sjögren disease.
Sjögren Europe urges greater recognition of invisible symptoms and the daily impact of Sjögren disease, calling for earlier diagnosis and support.
GLAND, SWITZERLAND, July 22, 2026 /EINPresswire.com/ -- Ahead of World Sjögren’s Day on 23 July, Sjögren Europe is calling for greater recognition of the often invisible and misunderstood impact of Sjögren disease through its Europe-wide “Nobody Listens” campaign (#NobodyListens).
Running throughout July and continuing until 31 July, the campaign shares the real experiences of people living with Sjögren disease and highlights a recurring message reported by patients across Europe: too often, their symptoms are not taken seriously, and their experiences are not believed.
Pain may not be visible. Debilitating fatigue may be mistaken for ordinary tiredness. Cognitive difficulties may be underestimated, while the wider effects of chronic illness on employment, family responsibilities, social life, mental wellbeing and financial security may remain unrecognised.
Through patient testimonies and apparently ordinary phrases such as “my belly hurts” or “I’m just tired”, the campaign shows how everyday language can conceal the impact of a chronic, systemic, serious, progressive, disabling, complex, heterogeneous, and unpredictable autoimmune disease.
Sjögren disease is a chronic autoimmune condition in which the immune system attacks the body’s moisture-producing glands and may also affect other organs and systems. Although it is widely associated with dry eyes and dry mouth, its impact can extend much further. People living with the disease may experience debilitating fatigue, joint and muscle pain, nerve pain, dysautonomia, cognitive difficulties often described as “brain fog”, and dryness affecting different parts of the body. In some cases, the lungs, kidneys, nervous system or lymphatic system may also be involved with a serious increased risk of lymphoma.
The disease disproportionately affects women, who account for approximately nine in ten diagnosed cases, while diagnosis can take several years. The 2026 international patient study Spotlight on Sjögren’s: A Patient Perspective on Burden of Disease found that most participants had experienced signs and symptoms for more than five years before receiving a diagnosis, with even longer delays reported in some countries.
“For years, people living with Sjögren disease have told us the same thing: they are not believed—not always by the people around them and, too often, not by the healthcare professionals they turn to for help. Chronic pain, overwhelming fatigue and the daily consequences of an invisible disease can be minimised or dismissed.
“This World Sjögren’s Day, we want every person living with Sjögren disease to know that we hear them, we believe them and we will continue working until they are heard everywhere else too. Listening is not simply an act of kindness; it is the starting point for recognition, appropriate care and meaningful support,” said the Board of Sjögren Europe.
Through the “Nobody Listens” campaign, Sjögren Europe is calling on healthcare professionals to show compassion and empathy by listening carefully to patient-reported symptoms, recognising the systemic nature of the disease and contributing to earlier diagnosis and avoiding irreversible damage
It is also urging policymakers and health systems to acknowledge the full impact of Sjögren disease on health, employment, family life, mental wellbeing, and financial security, and to make the necessary efforts to get an effective treatment approved. So far there’s no single treatment approved for Sjögren disease, and available therapeutic approaches are palliative. Employers are also encouraged to understand and appropriately support people living with fluctuating and invisible symptoms, while families, friends and the wider public are invited to listen without judgement and believe people when they describe the impact of their illness.
Throughout July, Sjögren Europe and its national member associations are sharing patient testimonies, campaign messages and awareness materials under the hashtags #NobodyListens and #WorldSjogrensDay.
About Sjögren Europe
Sjögren Europe is the European federation of national patient associations representing people living with Sjögren disease. Founded in February 2019 and headquartered in Gland, Switzerland, its mission is to bring greater visibility, attention, and solutions to Sjögren disease by advancing knowledge, research, information, treatment, and care, while promoting meaningful patient involvement in scientific, medical, political, and social decision-making.
Katy Antonopoulou
SJOGREN EUROPE
+30 693 225 3580
katy@sjogreneurope.org
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