Celebrating a Year of Impact and Progress for Sjögren’s Patients
As 2024 comes to a close, I’m filled with pride and gratitude for the incredible strides we’ve made together as a community in the fight against Sjögren’s disease. Every milestone we’ve achieved reflects the Sjögren’s Foundation’s unwavering commitment to improving the lives of patients, and I’m excited to share some of the highlights with you.
Changing the Name to Sjögren’s Disease
Since 2015, the Sjögren’s Foundation has been leading the charge to ensure that the words we use to describe Sjögren’s communicate that it is serious and systemic. This year, “Sjögren’s disease” became the official worldwide name, replacing “Sjögren’s syndrome.” This change, adopted by the international Sjögren’s community, is a powerful step toward changing how Sjögren’s is viewed—not just as dry eyes and dry mouth, but as a serious condition that can affect multiple systems in the body and requires a team approach to care.
Additionally, the term “secondary Sjögren’s” has been eliminated, as it implied that Sjögren’s was somehow “less than” other autoimmune diseases. These updates reflect years of collaboration and mark an important step in changing how Sjögren’s is understood, treated, and discussed. You can read more about this initiative here.
Advocating for Sjögren’s Patients
Advocating on behalf of patients remained central to our mission in 2024. One of the year’s key achievements was the adoption of U.S. House Resolution 1094, introduced by Representative Joseph Morelle (D-NY). This resolution formally acknowledges Sjögren’s disease as a serious, systemic condition, underscores that 4 million Americans are affected (half of whom remain undiagnosed), and calls for increased awareness and research funding.
Beyond this legislative milestone, we held 15 meetings with key stakeholders, including White House health staff, the U.S. Department of Health and Human Services (HHS), and the Centers for Medicare & Medicaid Services (CMS), to ensure that Sjögren’s stays a priority for policymakers and funding agencies.
Expanding Professional Education to Increase Knowledge and Improve Care
One of our key strategic focuses this year has been educating healthcare providers to ensure Sjögren’s disease is better understood and diagnosed across specialties, including but not limited to rheumatology, neurology, pulmonology, and primary care. As Sjögren’s patients know all too well, navigating this disease often requires the care of a wide variety of specialists—making provider education a monumental challenge. But it’s a challenge we are committed to tackling head-on. This year marks our biggest investment in professional education to date, driven by key messaging that emphasizes the serious, systemic nature of Sjögren’s and the need for a multidisciplinary approach to care. We are making incredible strides to meet this critical need.
Live Education and Conference Engagement
In 2024, we had the opportunity to engage with over 50,000 healthcare providers through major conferences such as the Rheumatology Advanced Practice Providers Conference, the American College of Rheumatology (ACR) Convergence, International Symposium on Sjögren’s (ISSjD), American Academy of Neurology Conference, and American Thoracic Society Conference, we participated in poster sessions, presented abstracts, hosted focused sessions, and showcased our work through booth exhibits. At ACR Convergence, we hosted a luncheon that drew 125 healthcare professionals. The focus was on the neurological manifestations of Sjögren’s disease and to initiate discussion of critically needed improvement of neurological outcomes in clinical trials.
Continuing Medical Education (CME) Programs
This year, we launched our first CME program tied to the January State of Sjögren’s professional event where we hosted approximately 400 providers. This program is now available on the Sjögren’s Training and Education Platform (STEP), ensuring even more healthcare professionals have access to education about the disease. We also partnered with Pri-Med to deliver a primary care program completed by over 4,500 providers, with 93% committing to changes in practice based on what they learned. Additionally, I presented a session at the Eyes on Dry Eyes Conference, which reached 6,000 attendees, to educate ophthalmologists on the systemic nature of Sjögren’s.
Driving Research and Clinical Trial Success
The Sjögren’s Foundation is proud to continue leading the charge in research that advances our understanding of Sjögren’s disease and paves the way for innovative treatments. Over the past two years, we have funded over $1.25 million in research, including the National Institutes of Health (NIH) Accelerating Medicines Partnership Autoimmune and Immune-Mediated Diseases (AMP® AIM) research project, a groundbreaking initiative that is redefining how autoimmune diseases are studied. The resulting data will accelerate our understanding of the fundamental mechanisms and causes of autoimmune disease, allow more informed selection of patients for clinical trials, and generate new targets for drug development.
The Foundation also helped fund the first year of the FNIH Biomarkers Consortium, a three-year research initiative launching in 2025. This project focuses on identifying specific biomarkers linked to Sjögren’s, enabling better diagnosis, risk assessment, and patient stratification for clinical trials—key to ensuring the success of emerging therapies. As a member of the steering committee, the Foundation is committed to ensuring Sjögren’s receives the attention and funding it deserves.
In addition to increasing funding for our Pilot and Impact Grants, we introduced two new grant mechanisms: Dynamic Grants for time-sensitive, critical research outside of the normal funding cycle, and Partner Grants to foster collaboration with other funding organizations, expanding resources for researchers and attracting new talent to the field. This year we also increased funding in support of Foundation research grants provided to clinical and scientific researchers and awarded $275,000 in new research grants— a $150,000 increase from last year! We are excited to continue making research a top priority. Read more about our research grants here.
The clinical trial landscape for Sjögren’s is busier than ever. This year, we have been working with ten different companies all in a clinical trial phase or coming into a phase for a Sjögrens therapy. These trials represent a critical step toward bringing new, disease-specific treatments to market, and we are optimistic that at least one therapy will be available within the next three years. One of the many ways the Foundation is supporting clinical trials is through our ESSDAI certification course, housed within the STEP Platform. ESSDAI, the FDA-approved tool for measuring disease activity and therapy response in Sjögren’s disease, is essential for ensuring consistency and accuracy in clinical trials. We’ve certified more than 3,000 principal investigators and clinical trial staff through this training.
Building a Connected and Empowered Community
Everything we do is centered around supporting and empowering patients. As a Sjögren’s patient myself, I deeply understand the daily struggles and challenges that come with managing this disease. That’s why our programs—ranging from support groups and patient education events to online communities and resources—are so vital.
This year, we expanded our Support Groups, ensuring more patients can connect with peers who understand their journey. I want to personally thank our Support Group Leaders for their tireless dedication to helping others. We also launched a new channel for connection: the Sjögren's Community on the Inspire™ Online Community platform, where patients can interact with one another and access expert insights through “Ask the Doc” sessions.
Our National Patient Conference, held in April, and the Fall Focus Conference, dedicated to ocular manifestations in November, brought together more than 2,100 attendees to hear from leading experts. This year, we introduced an upgraded virtual conference platform to enhance the overall experience, creating more opportunities for patients to interact with healthcare professionals and fellow attendees.
Beyond events, our website and blog have been invaluable resources. In 2024, our site saw over 2.1 million page views, with our blog attracting nearly 500,000 views. These platforms, along with active social media channels and patient resources like books and past conference materials, help us consistently deliver reliable and actionable information to the Sjögren’s community.
From our Patient-to-Patient Program to the Walk for Sjögren’s, which hosted nine walks this year, our focus remains on fostering a sense of community. Whether connecting through the Inspire™ platform or spending time together at virtual conferences, these opportunities allow patients to share experiences, build relationships, and find strength in knowing they’re not alone.
With all the momentum we’ve been building over the past few years, I am looking forward to 2025 and how we can continue to advance what we know about Sjögren’s and how we can improve the quality of life for all patients. As I reflect on this year, I am reminded of the strength and determination of our entire community—patients, healthcare professionals, supporters, members, partners, Board of Directors, staff, and volunteers. Each of you played a vital role in helping us achieve these milestones, and it’s a powerful reminder of what we can accomplish when we work together to create meaningful and lasting change.
Wishing you a happy and healthy holiday season!
Sincerely,
Janet E. Church
President & CEO (& Sjögren's patient)
Sjögren's Foundation
Celebrating a Year of Impact and Progress for Sjögren’s Patients
As 2024 comes to a close, I’m filled with pride and gratitude for the incredible strides we’ve made together as a community in the fight against Sjögren’s disease. Every milestone we’ve achieved reflects the Sjögren’s Foundation’s unwavering commitment to improving the lives of patients, and I’m excited to share some of the highlights with you.
Changing the Name to Sjögren’s Disease
Since 2015, the Sjögren’s Foundation has been leading the charge to ensure that the words we use to describe Sjögren’s communicate that it is serious and systemic. This year, “Sjögren’s disease” became the official worldwide name, replacing “Sjögren’s syndrome.” This change, adopted by the international Sjögren’s community, is a powerful step toward changing how Sjögren’s is viewed—not just as dry eyes and dry mouth, but as a serious condition that can affect multiple systems in the body and requires a team approach to care.
Additionally, the term “secondary Sjögren’s” has been eliminated, as it implied that Sjögren’s was somehow “less than” other autoimmune diseases. These updates reflect years of collaboration and mark an important step in changing how Sjögren’s is understood, treated, and discussed. You can read more about this initiative here.
Advocating for Sjögren’s Patients
Advocating on behalf of patients remained central to our mission in 2024. One of the year’s key achievements was the adoption of U.S. House Resolution 1094, introduced by Representative Joseph Morelle (D-NY). This resolution formally acknowledges Sjögren’s disease as a serious, systemic condition, underscores that 4 million Americans are affected (half of whom remain undiagnosed), and calls for increased awareness and research funding.
Beyond this legislative milestone, we held 15 meetings with key stakeholders, including White House health staff, the U.S. Department of Health and Human Services (HHS), and the Centers for Medicare & Medicaid Services (CMS), to ensure that Sjögren’s stays a priority for policymakers and funding agencies.
Expanding Professional Education to Increase Knowledge and Improve Care
One of our key strategic focuses this year has been educating healthcare providers to ensure Sjögren’s disease is better understood and diagnosed across specialties, including but not limited to rheumatology, neurology, pulmonology, and primary care. As Sjögren’s patients know all too well, navigating this disease often requires the care of a wide variety of specialists—making provider education a monumental challenge. But it’s a challenge we are committed to tackling head-on. This year marks our biggest investment in professional education to date, driven by key messaging that emphasizes the serious, systemic nature of Sjögren’s and the need for a multidisciplinary approach to care. We are making incredible strides to meet this critical need.
Live Education and Conference Engagement
In 2024, we had the opportunity to engage with over 50,000 healthcare providers through major conferences such as the Rheumatology Advanced Practice Providers Conference, the American College of Rheumatology (ACR) Convergence, International Symposium on Sjögren’s (ISSjD), American Academy of Neurology Conference, and American Thoracic Society Conference, we participated in poster sessions, presented abstracts, hosted focused sessions, and showcased our work through booth exhibits. At ACR Convergence, we hosted a luncheon that drew 125 healthcare professionals. The focus was on the neurological manifestations of Sjögren’s disease and to initiate discussion of critically needed improvement of neurological outcomes in clinical trials.
Continuing Medical Education (CME) Programs
This year, we launched our first CME program tied to the January State of Sjögren’s professional event where we hosted approximately 400 providers. This program is now available on the Sjögren’s Training and Education Platform (STEP), ensuring even more healthcare professionals have access to education about the disease. We also partnered with Pri-Med to deliver a primary care program completed by over 4,500 providers, with 93% committing to changes in practice based on what they learned. Additionally, I presented a session at the Eyes on Dry Eyes Conference, which reached 6,000 attendees, to educate ophthalmologists on the systemic nature of Sjögren’s.
Driving Research and Clinical Trial Success
The Sjögren’s Foundation is proud to continue leading the charge in research that advances our understanding of Sjögren’s disease and paves the way for innovative treatments. Over the past two years, we have funded over $1.25 million in research, including the National Institutes of Health (NIH) Accelerating Medicines Partnership Autoimmune and Immune-Mediated Diseases (AMP® AIM) research project, a groundbreaking initiative that is redefining how autoimmune diseases are studied. The resulting data will accelerate our understanding of the fundamental mechanisms and causes of autoimmune disease, allow more informed selection of patients for clinical trials, and generate new targets for drug development.
The Foundation also helped fund the first year of the FNIH Biomarkers Consortium, a three-year research initiative launching in 2025. This project focuses on identifying specific biomarkers linked to Sjögren’s, enabling better diagnosis, risk assessment, and patient stratification for clinical trials—key to ensuring the success of emerging therapies. As a member of the steering committee, the Foundation is committed to ensuring Sjögren’s receives the attention and funding it deserves.
In addition to increasing funding for our Pilot and Impact Grants, we introduced two new grant mechanisms: Dynamic Grants for time-sensitive, critical research outside of the normal funding cycle, and Partner Grants to foster collaboration with other funding organizations, expanding resources for researchers and attracting new talent to the field. This year we also increased funding in support of Foundation research grants provided to clinical and scientific researchers and awarded $275,000 in new research grants— a $150,000 increase from last year! We are excited to continue making research a top priority. Read more about our research grants here.
The clinical trial landscape for Sjögren’s is busier than ever. This year, we have been working with ten different companies all in a clinical trial phase or coming into a phase for a Sjögrens therapy. These trials represent a critical step toward bringing new, disease-specific treatments to market, and we are optimistic that at least one therapy will be available within the next three years. One of the many ways the Foundation is supporting clinical trials is through our ESSDAI certification course, housed within the STEP Platform. ESSDAI, the FDA-approved tool for measuring disease activity and therapy response in Sjögren’s disease, is essential for ensuring consistency and accuracy in clinical trials. We’ve certified more than 3,000 principal investigators and clinical trial staff through this training.
Building a Connected and Empowered Community
Everything we do is centered around supporting and empowering patients. As a Sjögren’s patient myself, I deeply understand the daily struggles and challenges that come with managing this disease. That’s why our programs—ranging from support groups and patient education events to online communities and resources—are so vital.
This year, we expanded our Support Groups, ensuring more patients can connect with peers who understand their journey. I want to personally thank our Support Group Leaders for their tireless dedication to helping others. We also launched a new channel for connection: the Sjögren's Community on the Inspire™ Online Community platform, where patients can interact with one another and access expert insights through “Ask the Doc” sessions.
Our National Patient Conference, held in April, and the Fall Focus Conference, dedicated to ocular manifestations in November, brought together more than 2,100 attendees to hear from leading experts. This year, we introduced an upgraded virtual conference platform to enhance the overall experience, creating more opportunities for patients to interact with healthcare professionals and fellow attendees.
Beyond events, our website and blog have been invaluable resources. In 2024, our site saw over 2.1 million page views, with our blog attracting nearly 500,000 views. These platforms, along with active social media channels and patient resources like books and past conference materials, help us consistently deliver reliable and actionable information to the Sjögren’s community.
From our Patient-to-Patient Program to the Walk for Sjögren’s, which hosted nine walks this year, our focus remains on fostering a sense of community. Whether connecting through the Inspire™ platform or spending time together at virtual conferences, these opportunities allow patients to share experiences, build relationships, and find strength in knowing they’re not alone.
With all the momentum we’ve been building over the past few years, I am looking forward to 2025 and how we can continue to advance what we know about Sjögren’s and how we can improve the quality of life for all patients. As I reflect on this year, I am reminded of the strength and determination of our entire community—patients, healthcare professionals, supporters, members, partners, Board of Directors, staff, and volunteers. Each of you played a vital role in helping us achieve these milestones, and it’s a powerful reminder of what we can accomplish when we work together to create meaningful and lasting change.
Wishing you a happy and healthy holiday season!
Sincerely,
Janet E. Church
President & CEO (& Sjögren's patient)
Sjögren's Foundation