A letter from Sjögren's Foundation President & CEO, Janet E. Church
As we close out 2025, I can’t help but feel an incredible sense of pride and excitement for all we’ve accomplished together this year. 2025 was an incredible year of achievements for the Sjögren’s Foundation as we ushered in a new era for the Sjögren’s community. The official name change from Sjögren’s syndrome to Sjögren’s disease was adopted worldwide, signaling to all that this disease is a systemic and serious autoimmune disease. In addition, many Sjögren’s clinical trials were active, with more on the way, reflecting growing recognition that this disease needs a systemic therapy to slow progression and ease symptom burden.
And just recently, at the beginning of December, we were excited to share the first-ever Clinical Practice Guideline for Evaluation and Management of Peripheral Nervous System Manifestations in Sjögren's Disease, produced by the Sjögren’s Foundation, had been reviewed, accepted and published in Arthritis Care and Research, a peer-reviewed publication of The American College of Rheumatology. This guideline validates what many patients have voiced for years. These neurological symptoms are real, they are part of Sjögren’s disease, and they deserve appropriate evaluation and care. It provides clear recommendations to help doctors better recognize and treat these complications, improving care for people who often wait too long for answers.
The Foundation continued to invest in research and scientific advancement, with more than two million dollars invested in research over the last four years to advance understanding, improve diagnosis, and drive progress toward new treatments.
The Foundation also supported multiple global clinical trials for emerging therapies in Sjögren’s disease, including the first Phase III study to show a statistically significant reduction in disease activity, by helping recruit participants, reviewing study materials, and engaging healthcare professionals. Through our STEP platform, we reached the milestone of 4,400 international healthcare professionals and clinical investigators trained, helping ensure consistent understanding and scoring of systemic disease activity in clinical trials. We also engaged with more than 20,000 healthcare professionals at their conferences and supported numerous partner CME programs reaching healthcare providers in different specialties.
Our advocacy work continued to open doors and raise visibility for Sjögren’s at the national level. We expanded national awareness and advocacy by hosting a congressional briefing and presenting the new House Resolution 245, securing language on Sjögren’s in the FY26 House Appropriations Committee report, and earning national media coverage in outlets such as AARP, The Rheumatologist, Healio, and RheumNow, which highlighted the seriousness of Sjögren’s disease and the official name change to Sjögren’s disease. These achievements reflect how far we’ve come in building recognition and driving change for the Sjögren’s community.
This year also marked the launch of the new Foundation for the National Institutes of Health (FNIH) Sjögren’s Biomarkers Consortium project called the Molecular Characterization and Diagnostic Biomarkers of Sjögren’s Disease project, with the goal of finding new biomarkers in Sjögren’s. This program focuses specifically on identifying diagnostic and clinical biomarkers to improve diagnosis of Sjögren’s in undiagnosed patients and discover potentially new therapeutic targets.
At the heart of everything we do is our commitment to patients. We reached thousands of patients through our National Patient Conference, the 2025 Living with Sjögren’s Patient Survey which had over 6,300 respondents, new educational resources, and a growing support network. We also hosted The Future of Sjögren’s Treatments Patient Seminar, which reached more than 5,000 patients eager to learn about potential new therapies and their mechanisms of action, empowering patients with up-to-date information and renewed hope. I am especially proud of how our programs help people feel seen, supported, and connected. These efforts ensure that no one living with Sjögren’s has to face this disease alone.
As a Sjögren’s patient myself, I feel more hopeful today than ever before. The progress we are seeing is real and it is opening doors that once felt out of reach. Next year will be a big year for our community and I am excited, energized, and honored to be on this journey with you.
Janet Church
President & CEO
A letter from Sjögren's Foundation President & CEO, Janet E. Church
As we close out 2025, I can’t help but feel an incredible sense of pride and excitement for all we’ve accomplished together this year. 2025 was an incredible year of achievements for the Sjögren’s Foundation as we ushered in a new era for the Sjögren’s community. The official name change from Sjögren’s syndrome to Sjögren’s disease was adopted worldwide, signaling to all that this disease is a systemic and serious autoimmune disease. In addition, many Sjögren’s clinical trials were active, with more on the way, reflecting growing recognition that this disease needs a systemic therapy to slow progression and ease symptom burden.
And just recently, at the beginning of December, we were excited to share the first-ever Clinical Practice Guideline for Evaluation and Management of Peripheral Nervous System Manifestations in Sjögren's Disease, produced by the Sjögren’s Foundation, had been reviewed, accepted and published in Arthritis Care and Research, a peer-reviewed publication of The American College of Rheumatology. This guideline validates what many patients have voiced for years. These neurological symptoms are real, they are part of Sjögren’s disease, and they deserve appropriate evaluation and care. It provides clear recommendations to help doctors better recognize and treat these complications, improving care for people who often wait too long for answers.
The Foundation continued to invest in research and scientific advancement, with more than two million dollars invested in research over the last four years to advance understanding, improve diagnosis, and drive progress toward new treatments.
The Foundation also supported multiple global clinical trials for emerging therapies in Sjögren’s disease, including the first Phase III study to show a statistically significant reduction in disease activity, by helping recruit participants, reviewing study materials, and engaging healthcare professionals. Through our STEP platform, we reached the milestone of 4,400 international healthcare professionals and clinical investigators trained, helping ensure consistent understanding and scoring of systemic disease activity in clinical trials. We also engaged with more than 20,000 healthcare professionals at their conferences and supported numerous partner CME programs reaching healthcare providers in different specialties.
Our advocacy work continued to open doors and raise visibility for Sjögren’s at the national level. We expanded national awareness and advocacy by hosting a congressional briefing and presenting the new House Resolution 245, securing language on Sjögren’s in the FY26 House Appropriations Committee report, and earning national media coverage in outlets such as AARP, The Rheumatologist, Healio, and RheumNow, which highlighted the seriousness of Sjögren’s disease and the official name change to Sjögren’s disease. These achievements reflect how far we’ve come in building recognition and driving change for the Sjögren’s community.
This year also marked the launch of the new Foundation for the National Institutes of Health (FNIH) Sjögren’s Biomarkers Consortium project called the Molecular Characterization and Diagnostic Biomarkers of Sjögren’s Disease project, with the goal of finding new biomarkers in Sjögren’s. This program focuses specifically on identifying diagnostic and clinical biomarkers to improve diagnosis of Sjögren’s in undiagnosed patients and discover potentially new therapeutic targets.
At the heart of everything we do is our commitment to patients. We reached thousands of patients through our National Patient Conference, the 2025 Living with Sjögren’s Patient Survey which had over 6,300 respondents, new educational resources, and a growing support network. We also hosted The Future of Sjögren’s Treatments Patient Seminar, which reached more than 5,000 patients eager to learn about potential new therapies and their mechanisms of action, empowering patients with up-to-date information and renewed hope. I am especially proud of how our programs help people feel seen, supported, and connected. These efforts ensure that no one living with Sjögren’s has to face this disease alone.
As a Sjögren’s patient myself, I feel more hopeful today than ever before. The progress we are seeing is real and it is opening doors that once felt out of reach. Next year will be a big year for our community and I am excited, energized, and honored to be on this journey with you.
Janet Church
President & CEO