We are proud to share that Nature Reviews Rheumatology has published the manuscript formalizing the international consensus to change Sjögren’s syndrome to Sjögren’s disease. This is a pivotal moment for the entire Sjögren’s community.
Read the published manuscript: https://www.nature.com/articles/s41584-025-01268-z
For any major scientific initiative, especially one that impacts clinical practice and terminology, publication in a peer-reviewed journal is critical. This step ensures the name change is formally accepted internationally by medical organizations, research institutions, and academic institutions, and paves the way for widespread adoption in research, diagnosis, treatment, and education.
This newly published manuscript represents the culmination of years of advocacy, research, and collaboration. Retiring the term "syndrome" isn’t just a shift in language, it’s a meaningful correction that better reflects the seriousness of the disease and validates the lived experiences of millions around the world.
Note: In the United States, the term Sjögren’s disease will retain the possessive form (Sjögren's), with or without the umlaut (ö), as is commonly used in U.S. medical literature, healthcare records, patient advocacy, healthcare communications and at medical institutions.
Why This Change Matters
- Language shapes perception. Referring to Sjögren's as a "syndrome" may inadvertently suggest it’s just a collection of symptoms rather than a serious autoimmune disease. This mischaracterization can lead to misunderstandings among healthcare providers, patients, and the public, potentially impacting diagnosis, treatment, and research funding.
- The word “syndrome” minimizes the seriousness of this systemic autoimmune disease. Sjögren’s is a complex, multisystem disease that affects moisture-producing glands and can involve serious complications in any organ including the lungs, kidneys, nervous system, and more.
- The terminology update also discontinues the use of “primary” and “secondary” Sjögren’s, acknowledging that Sjögren’s should be recognized on its own, regardless of whether other autoimmune diseases are present.
- This shift is crucial for improving diagnosis, enhancing patient care, and ensuring Sjögren’s is taken seriously by the medical community.
As we mark this milestone, we remain committed to educating all stakeholders, advocating for research funding, and supporting every person living with Sjögren’s disease.
We are calling on the Sjögren’s community, organizations, publications, media, and healthcare providers to review and update references of “Sjögren’s syndrome” to "Sjogren's disease" as well as dropping the use of "secondary."
Read the full history of the name change and how we helped bring the international Sjögren’s medical, research and patient community together.
Why the Disease Name Changed
Overview of the Process
The Patient Voice
Formal Use of Sjögren’s Disease Adopted
Official Consensus Published in Nature Reviews Rheumatology
We are proud to share that Nature Reviews Rheumatology has published the manuscript formalizing the international consensus to change Sjögren’s syndrome to Sjögren’s disease. This is a pivotal moment for the entire Sjögren’s community.
Read the published manuscript: https://www.nature.com/articles/s41584-025-01268-z
For any major scientific initiative, especially one that impacts clinical practice and terminology, publication in a peer-reviewed journal is critical. This step ensures the name change is formally accepted internationally by medical organizations, research institutions, and academic institutions, and paves the way for widespread adoption in research, diagnosis, treatment, and education.
This newly published manuscript represents the culmination of years of advocacy, research, and collaboration. Retiring the term "syndrome" isn’t just a shift in language, it’s a meaningful correction that better reflects the seriousness of the disease and validates the lived experiences of millions around the world.
Note: In the United States, the term Sjögren’s disease will retain the possessive form (Sjögren's), with or without the umlaut (ö), as is commonly used in U.S. medical literature, healthcare records, patient advocacy, healthcare communications and at medical institutions.
Why This Change Matters
As we mark this milestone, we remain committed to educating all stakeholders, advocating for research funding, and supporting every person living with Sjögren’s disease.
We are calling on the Sjögren’s community, organizations, publications, media, and healthcare providers to review and update references of “Sjögren’s syndrome” to "Sjogren's disease" as well as dropping the use of "secondary."
Read the full history of the name change and how we helped bring the international Sjögren’s medical, research and patient community together.
Why the Disease Name Changed
Overview of the Process
The Patient Voice
Formal Use of Sjögren’s Disease Adopted
Official Consensus Published in Nature Reviews Rheumatology