World Sjögren's Day 2026: Recognizing an autoimmune disease that takes years to diagnose

Every July 23, patient organizations, clinicians, and researchers around the world mark World Sjögren's Day. The date is set aside to raise awareness of a condition that affects millions of people yet remains one of the most misunderstood autoimmune diseases in medicine. For many patients, the day is also a reminder that recognition itself is a medical issue, because delayed recognition is one of the defining features of Sjögren's disease.

Why July 23 marks World Sjögren's Day

The date honors the birthday of Dr. Henrik Sjögren, a Swedish ophthalmologist born on July 23, 1899. His 1933 doctoral thesis was the first to describe the combination of dry eyes, dry mouth, and joint pain as one distinct autoimmune condition. Before his work, those symptoms were often treated as unrelated problems, and patients rarely received an accurate diagnosis.

World Sjögren's Day was established by the Sjögren's Foundation, a United States patient organization founded in 1983. The day is now observed globally by patient federations across Europe, hospital-led campaigns in India, and self-help groups in Germany, Switzerland, and other countries. The purpose is straightforward: bring public attention to a disease that is common, serious, and consistently underdiagnosed. Sjögren's disease is one example among many where public health impact depends on how well the general population understands a condition.

What Sjögren's disease is in plain language

Sjögren's disease is a chronic autoimmune condition, meaning the immune system mistakenly attacks parts of the body it should protect. In Sjögren's, the primary target is the exocrine glands, the moisture-producing glands responsible for tears, saliva, and other fluids that keep tissues comfortable. When those glands are damaged by ongoing immune activity, the result is persistent dryness of the eyes and mouth, often accompanied by dryness elsewhere in the body.

Sjögren's is also systemic, meaning it can affect organs and tissues far beyond the glands themselves. Joint pain, skin changes, lung inflammation, kidney involvement, nerve pain, and profound fatigue are all recognized features of the disease. The condition is pronounced “SHOW-grins,” and it is one of the more common autoimmune diseases worldwide. For readers new to clinical research generally, this beginner-friendly overview of how clinical trials work is a useful companion.

Why the name changed from syndrome to disease

For decades, the condition was called Sjögren's syndrome. The word “syndrome” suggested a collection of symptoms rather than a disease in its own right, and many patients felt that framing minimized how serious the condition actually is. Physicians who specialize in autoimmune disease raised the same concern.

In mid-2025, an international consensus paper published in a leading rheumatology journal formalized a change that had been building for years. The correct term is now Sjögren's disease. The same consensus also retired the traditional split between primary Sjögren's, meaning the disease occurring on its own, and secondary Sjögren's, meaning the disease occurring alongside another autoimmune condition such as lupus or rheumatoid arthritis. Under the updated language, the disease is described as Sjögren's disease with an associated autoimmune condition, rather than as secondary. Names shape recognition, and a disease is investigated, funded, and taught differently than a syndrome.

Who Sjögren's affects and why diagnosis takes years

Sjögren's disease affects women far more often than men, with women making up roughly nine in every ten diagnosed patients. Onset is most common in the 40s and 50s, though the condition also occurs in men, in younger adults, and in children. It appears across all racial and ethnic groups, and it is likely underdiagnosed in populations that face barriers to specialty care.

Diagnosis often takes years. Patient organizations describe an average of several years between the first symptoms and a confirmed diagnosis, and some peer-reviewed sources describe delays of a decade or longer. Several factors drive that gap. Early symptoms like fatigue, aches, and mild dryness are nonspecific and overlap with many other conditions. Patients frequently report different symptoms to different specialists, mentioning eye dryness to an ophthalmologist, mouth symptoms to a dentist, and fatigue and joint pain to a primary care clinician, and no single provider sees the full picture. Shared antibodies and shared clinical features with lupus and rheumatoid arthritis also make Sjögren's easy to misclassify. For people exploring participation in research, understanding why not everyone qualifies for a trial can help set realistic expectations about what a Sjögren's-focused study will screen for.

Why Sjögren's is often called an invisible illness

Public perception tends to reduce Sjögren's to “dry eyes and dry mouth.” In practice, dryness is only one part of what patients experience. In a large 2025 survey conducted by the Sjögren's Foundation, patients described dozens of different symptoms, and when asked to name the single symptom with the greatest impact on daily life, most did not name dryness at all. Fatigue was the most common answer, followed by joint pain and brain fog.

The invisible-illness framing captures something specific about the disease. Many patients look well while managing significant systemic burden. A meaningful share of patients develop extraglandular involvement, meaning disease activity beyond the moisture glands, including inflammation of the joints, skin, lungs, kidneys, or nerves. There is also an elevated long-term risk of a specific type of lymphoma, which is one reason ongoing medical monitoring matters throughout life with the disease. For readers considering research participation as part of that longer arc, this volunteers guide walks through what a first step into clinical trials looks like.

Where clinical research on Sjögren's stands in 2026

For most of the modern history of Sjögren's disease, no therapy has been approved specifically to modify the disease itself. Care has focused on managing symptoms, using artificial tears and saliva substitutes, and treating flares with immunomodulating medications originally developed for related autoimmune conditions. That reality is finally shifting.

The period from 2024 through 2026 has been a genuine turning point. Two large late-stage trials of a targeted therapy for Sjögren's disease reported the first clearly positive results at a major rheumatology conference in late 2025. In January 2026, the United States Food and Drug Administration granted a Breakthrough Therapy designation to an investigational monoclonal antibody being studied in the condition, a regulatory pathway reserved for candidates that show substantial improvement over existing options. Several other candidates are in mid- to late-stage development, addressing different immune pathways.

None of this is a promise of a cure or a specific outcome for any individual. What it does mean is that clinical trials in Sjögren's disease are more numerous and more clinically meaningful than at almost any prior point, and that people living with the condition have more research pathways to explore alongside their care team than they did even a few years ago. Clinical trials are how disease-modifying options move from possibility to standard care, and Sjögren's disease is now clearly part of that trajectory.

How DecenTrialz supports people exploring Sjögren's trials

For someone considering a clinical trial, the earliest steps are often the most confusing. Finding studies that match a specific diagnosis, understanding what participation would involve, and identifying which trials are recruiting within reach can be difficult to navigate alone.

DecenTrialz is a United States clinical trial recruitment platform that uses AI-assisted participant matching to surface studies aligned with a person's condition, medical history, and location. A registered nurse then conducts pre-screening to review the initial match before a research site is contacted. The registered nurse pre-screens only. All final eligibility determinations, the full study walk-through, informed consent, and enrollment are handled by the research site team once a candidate is referred forward.

To explore Sjögren's disease studies through this pathway, visit decentrialz.com to begin the matching process.

How to get involved on World Sjögren's Day

World Sjögren's Day is a reminder that recognition matters. Sharing accurate information about the disease helps chip away at the years-long diagnostic delay so many patients describe. Supporting patient organizations, learning about the systemic nature of the condition, and encouraging people with persistent dryness, unexplained fatigue, or joint pain to raise the possibility with a clinician are all meaningful ways to observe July 23.

For people who suspect Sjögren's disease may be part of their own story, or who have already received a diagnosis and want to understand what clinical research options exist, decentrialz.com offers a starting point to explore trials that are currently recruiting.