Our Impact

This past year, the Sjögren's Foundation celebrated its 40th anniversary. After being diagnosed with Sjögren's in 1983, Elaine Harris held the very first support group in September 1983. This is the date we mark as our first day of operation and what sparked the beginning of what has grown to become today’s Sjögren's Foundation with national and international reach and accomplishments. The Foundation spent the past year recognizing 40 years of progress, acknowledging where we have come from, where we are now and where we are headed in support of Sjögren’s patients. We also recognized all the patients, healthcare providers, researchers, volunteers, and donors who helped us achieve this exciting milestone! As we celebrat this milestone, we remain focused on building momentum and advancing our mission to improve the lives of all Sjögren's patients. 

At the Sjögren's Foundation, supporting and empowering patients remains at the heart of everything we do. Over the past year, we expanded our programs, resources, and opportunities for connection to ensure patients feel informed, empowered and supported.

National Patient Conference (Virtual)

The Sjögren's Foundation held our annual National Patient Conference on April 5-6, 2024. Over 1,000 people registered for this virtual event where they were able to learn directly from Sjögren's experts. In 2024 we upgraded our virtual event platform to provide patient-to-patient interaction and direct exhibitor contact. All new Sjögren's patient communities allowed patients to connect, share and learn from each other. Additionally, new virtual exhibitor booths allowed access to company resources and/or information as well as the ability to interact with exhibitor representatives.

Fall Focus Conference (Virtual)

In 2024, the Foundation's One-Day Fall Focus Conference was held virtually on November 9th. Over 900 people registered for this event focused on "Looking Deeper into Ocular Manifestations of Sjögren's Disease".

Support Groups

There are over 60 support groups led by a volunteer support group leader with almost every state represented.. This includes specialty support groups for patients in their 20s and 30s, men with Sjögren's, and parents of pediatric Sjögren's patients. 

The Foundation continues to be the lead organization for the International Sjögren's Network of Sjögren's patient groups

Awareness Ambassador Program
This year, 263 Awareness Ambassadors from across the country participated in three focused campaigns:
o    Difficult to diagnose patients
o    Dry mouth
o    State of Sjögren's
Awareness Ambassadors continue to make a significant impact educating healthcare professionals about Sjögren's. 

Patient Support Volunteer Program
Our 98 Patient Support Volunteers generously give their time to connect with fellow patients, answering questions via phone and email to provide guidance, understanding, and a listening ear.

Conquering Sjögren's newsletter
In 2024, we enhanced our member newsletter by including more science and research-focused articles to help patients better understand the disease and advancements happening around the disease.

New Patient Education Materials
The Sjögren's Foundation developed several new patient resource sheets covering essential topics, including guidance  for seronegative patients who are often the most difficult to diagnose.

Foundation blog
This year, we continued to expand our blog, featuring articles on diverse and important topics. Our blog attracted nearly 500,000 views and featured topics like:
o      Stop BLOQ: Sharing information about a life-saving research and intervention program for women who are at high-risk of carrying a child with fetal heartblock.
o    Glymphatic System and its Potential Role in Sjögren’s
o    Language Matters! The International Sjögren’s Community Changes Sjögren’s Syndrome to Sjögren’s Disease!Interstitial Lung Disease in Sjögren's 
o     Ocular Health Implications of Dysautonomia
o    Advocacy updates and ways to have your voice heard

Patient-to-Patient Program
Due to overwhelming response, the Sjögren's Foundation doubled the number of Patient-to-Patient stories shared on our website. We now feature two stories per month. These experiences bring the realities of living with Sjögren’s to light, helping patients feel seen and understood.

Inspire Patient Support Community 
 In partnership with Inspire, a leading provider of online health communities, the Foundation provides an online community where patients can connect, share tips, ask symptom questions, and learn from one another virtually. 

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. We are excited to announce that the international Sjögren’s community s officially changed the disease name from Sjögren’s syndrome to Sjögren’s disease to better indicate the serious and systemic nature of the disease. The term “secondary Sjögren’s” meant to label that a patient has Sjogren’s plus another autoimmune disease, was also discarded as it connoted that Sjögren’s was “less than” the other disease(s). The task force has written an abstract proclaiming the nomenclature change and it is currently awaiting publication in a scientific journal. As soon as it is published, we will share the article entitled, “2024 International Rome Consensus on the Nomenclature of Sjögren's Disease” with the Sjögren’s community. Final conclusions on nomenclature can be seen here.

Resolution Reaffirming April as Sjögren's Awareness Month
After a year-long endeavor by the Foundation, in March 2024, Congressman Joe Morelle introduced U.S. House Resolution #1094 reaffirming April as Sjögren's Awareness Month and sharing updated information about Sjögren's disease. This new Congressional Resolution replaced the Resolution that was first introduced in 1998. The emphasis of the Resolution was on Sjögren’s as a serious and systemic autoimmune disease and furthering ongoing federal research. The Resolution will serve as a reference for lawmakers and the public on Sjögren’s disease, raising awareness and supporting efforts with future funding and programmatic requests.

Advocating for Dental Coverage under Medicare
The Sjögren's Foundation continued to lead the charge for the Centers for Medicare and Medicaid Services (CMS) to provide dental coverage under Medicare for autoimmune disease patients. While CMS did not move forward with the Foundation’s nomination, they did provide feedback that offers a way forward to continue our pursuit for Medicare dental coverage for this population of Medicare beneficiaries with an autoimmune disease. Additionally, the Foundation has engaged in valuable dialogue with key opinion leaders as well as with CMS to build recognition of the need for dental services for Sjögren's and other autoimmune disease patients. This effort has also included collaborating with other groups and meeting with many federal agencies and offices. The Foundation also met independently with legislators on Capitol Hill and provided written Congressional testimony on the issue. We are proud of our work to-date and will not give up the fight to ensure all patients get the coverage they need!

Federal Focus on Autoimmune Diseases & Sjögren's
The Sjögren's Foundation worked tirelessly in 2024 to advocate for Sjögren's patients:
o    The Foundation has supported and created opportunities around the new Federal Women’s Health Research Focus. This includes the new NIH Office of Autoimmune Disease Research (OADR) and the White House Women’s Health Initiative led by First Lady Jill Biden.
o    The Foundation also has its voice heard by responding to federal requests for information as it relates to over-the-counter drug costs and increasing patient access to treatments. We also contributed to the strategic plan for OADR and Foundation key opinion leaders participated in Academic Round Tables as well as actively participate in OADR meetings.
 

Representing the Sjögren's Patient Voice
The Foundation attends several NIH Advisory and other meetings to increase visibility. Additionally, staff represent the patient voice by serving on more than a dozen coalitions / committees. These include:
o    National Health Council 
o    National Institute of Dental & Craniofacial Research 
o    Friends of the National Institute of Dental & Craniofacial Research 
o    National Institute of Arthritis & Musculoskeletal & Skin Diseases Coalition 
o    American Association for Dental Research  
o    ARPA-H 
o    Autoimmune Association 
o    Research America 
o    Association for Accessible Medicines 
o    Alliance for Patient Access 
o    Pulmonary Hypertension & Associated Conditions 
o    NIH Autoimmune Disease Coordinating Committee 
o    Consortium for Medically Necessary Oral Health Coverage 
o    Childhood Sjögren’s International Working Group 
 

Clinical trials are designed to add to medical knowledge and most importantly, the results of these trials can make a difference in the care and treatment of Sjögren’s patients.  A clinical trial is important because it contributes to the advancement of science. It provides the participants an opportunity to receive potential benefit from a drug, medical device or procedure or even a lifestyle change such as diet or exercise. The Sjögren’s Foundation is fully committed to the development of new therapeutics that will treat the entire disease, not just one symptom.   

International Clinical Trials Consortium 
The Foundation continues to lead the International Clinical Trials Consortium to ensure successful trial design and implementation so Sjögren’s patients will have access to needed systemic therapies as soon as possible and companies remain engaged in Sjögren’s to develop future treatments. A virtual meeting was held on clinical trial design with principal investigators and corporate members.

International Initiatives for Successful Clinical Trials
Kathy Hammitt, Vice President of Medical & Scientific Affairs, serves on NECESSITY scientific committee and on patient advisory group to identify sensitive clinical endpoints that could be used in clinical trials to determine whether a new Sjögren’s medicine works or not. She also serves on the Life Impact Working Group for OMERACT which supports the development of Core Outcome Sets identifying patient and disease-relevant areas to be measured and the corresponding measurement instruments for use in clinical trials, including those for regulatory approval of new treatments.

Corporate Relations & Clinical Trials
The Foundation works closely with our corporate members, pharmaceutical companies, that are conducting clinical trials for a systemic Sjögren's drug. The Foundation works with companies to provide training for their investigators and on dataset programs. We also provide input into the protocol development. Additionally, the Foundation coordinated patient and provider awareness and education for each trial as well as assists with patient recruitment. We have also worked directly with the Clinical Trial sites and with patients to ensure successful trials. There are currently three (3) trials that are in Phase 3 and enrolling patients. This is an incredibly exciting time for Sjogrens and the possibility of Sjögren's-specific systemic therapies.

ESSDAI Certification Program. 
The Foundation has continued to offer clinical trial endpoint training through the ESSDAI and ClinESSDAI Certification Programs. These courses live on the Foundation’s Sjogren’s Training and Education (STEP), a growing repository of professional education and resources for clinicians and researchers. To date, and by working with multiple companies conducting Phase II and Phase III clinical trials for Sjogren’s, the Foundation has provided certification for more than 3,000 clinical trial investigators and support staff around the world, with many more planned for the future.
 

State of Sjögren's

The Foundation began the year with our 3rd annual State of Sjögren's. This is an annual professional event presenting the most recent information and research about Sjögren's disease. This virtual event is open to all professionals working in Sjögren’s and caring for Sjögren's patients. This year’s program focused on the many faces of Sjögren's and the difficult-to-diagnose patient. More than 400 healthcare providers and clinicians registered for the live event. The program also provided continuing medical education credits.

Online Continuing Medical Education (CME) Programs
o    2024 State of Sjögren's (Accredited by National Jewish Health) 
o    Partnered with National Jewish Health on a program that ran for a year and concluded in September 2024. The program focus was “Sjögren's Disease: A Multidisciplinary Approach to Diagnosis and Management.” The program had over 2,000 total learners and far exceeded Foundation goals.
o    Partnered with PriMed on a program that ran for a year and concluded in May 2024. The program focus was “Diagnosing and Managing Multi-system Sjögren's: More Common Than You May Think.” The program had over 5,000 total learners and far exceeded Foundation goals.

Created New Provider Education Resources

Professional Conferences

Attended or promoted Sjögren's at various professional conferences to expand the Foundation’s reach and to build relationships with new providers and grow relationships with existing providers already associated with the Foundation. Conferences included:
o    American Academy of Neurology Annual Meeting
o    American Thoracic Society Conference
o    Rheumatology Advanced Practice Providers Annual Conference
o    American College of Rheumatology Convergence

The Foundation once again had a very large presence at the 2024 American College of Rheumatology Convergence. In addition to having a booth in the Exhibit Hall, the Foundation hosted a luncheon for more than 125 attendees with a program focused on the nervous system and Sjögren's. There were also 16 scientific sessions with Sjögren's-related work and three of those sessions specifically dedicated to Sjögren's. There were also two Sjögren's dedicated poster sessions, three Foundation authorship posters, including one patient perspective, and a total of 77 Sjögren's-related research abstracts.

Sjögren's Quarterly

The Foundation continues to put together a medical and scientific newsletter, Sjögren's Quarterly, which provides our professional community with the most up-to-date happenings in Sjögren's.

The Peripheral Nervous System Clinical Practice Guidelines

The Peripheral Nervous System Clinical Practice Guidelines have been completed and are awaiting publication with a professional journal. They will address mononeuropathy (trigeminal neuralgia), polyneuropathy (small fiber neuropathy, sensation and pain, large fiber neuropathy, demyelination, vasculitic neuropathy) & autonomic nervous system involvement. This effort also significantly expanded the involvement of neurologists in Sjögren's and with the Foundation.

In putting together the PNS guidelines, our Topic Review Group discovered that the terms used, when referring to the same concerns, are different between neurologists and rheumatologists. To address this, the guidelines group led a second effort to clarify these language differences which will be published in Arthritis and Rheumatology. 
 

The Sjögren’s Foundation strives to foster innovative research that will have the greatest potential impact on Sjögren’s patients.

16th International Symposium for Sjögren's Disease

The International Symposium for Sjögren's Disease took place in Amsterdam, Holland in April 2024 and was themed “Looking Forward” as it focused on new research, diagnostic tools, and cross-disciplinary collaboration. Most notable was that this is the first year the conference changed its name from International Symposium for Sjögren's Syndrome to Sjögren's Disease, reflecting that Sjögren's is also recognized internationally as a serious and systemic disease!

The Foundation was well represented with several staff in attendance including Janet Church, President & CEO, Kathy Hammitt, Vice President of Medical & Scientific Affairs, and Matt Makara, Senior Director of Medical & Scientific Affairs. Kathy Hammitt opened the conference with a presentation on “Aligning Patient and Clinician Perspectives”. The Foundation also gave five additional presentations: one oral talk and four poster presentations. The oral talk focused on the Foundation’s newest clinical practice guidelines for the Peripheral Nervous System (PNS) and the posters discussed the following topics: Postural Orthostatic Syndrome (POTS) and Sjögren’s, Respiratory Manifestations in Sjögren’s, Rheumatology and Neurology Nomenclature, and our 40th year timeline to highlight the progress made in Sjögren’s.

Sjögren's Foundation Research Grant Program
Over the past three years, the Sjögren's Foundation has invested $1.8 million in research. In 2024, the Foundation Research Grant program awarded three Pilot Grants, one High Impact Grant, and one Dynamic Grant. These Foundation grants not only support research that will benefit patients with Sjögren’s, but they are also an investment in the researchers who receive the grants.

The Pilot Grants were awarded to Jennifer King, MD, PhD at the University of California, Los Angeles who will analyze the molecular characteristics of treatment responsive patients to understand the biological changes in effect; Abigail Koppes, PhD at Northeastern University who will utilize advanced technologies to study nervous system interactions in Sjögren’s and the connection to dysautonomia; and Eiko Yamada, DDS, PhD at the National Institute of Dental & Craniofacial Research who is investigating new disease pathways.

The High Impact Grant was awarded to Hal Scofield, MD at the Oklahoma Medical Research Foundation who will focus on the mechanisms of fatigue in Sjögren’s, a debilitating symptom for many patients. 

The Dynamic Grant was awarded to Dana DiRenzo, MD, MHS at the University of Pennsylvania. Dr. DiRenzo’s objective is to determine a core outcome set of domains for Sjögren’s clinical trials to better measure the impact of a treatment to disease activity in patients.

FNIH AMP AIM Research Project & Sjögrens

The Sjögren's Foundation is proud to participate in and support the Foundation for the National Institutes of Health (FNIH) Accelerating Medicines Partnership Autoimmune and Immune-Mediated Diseases (AMP®AIM) collaborative. This, and other research managed by the FNIH are partnerships between the public (NIH), industry (pharmaceutical companies and other related businesses), and patients and the advocacy organizations who represent them, such as the Sjögren's Foundation which ensures the patient voice is an influential part of the research process. 

The AMP®AIM is highly innovative in its approach of dissecting autoimmune diseases down to the core genetic and biological mechanisms across the lifespan. It provides an unprecedented opportunity for potential rapid translation to drug discovery, which is especially relevant to Sjögren's given its current lack of effective treatment. Furthermore, the systematic alignment of the data and biospecimen collection and curation across not only STAMP sites, but across three other autoimmune diseases, will enable a better understanding of disease mechanisms that may overlap across these diseases. It represents an opportunity of collaboration across not only STAMP sites, but across three other autoimmune diseases, will enable a better understanding of disease mechanisms that may overlap across these diseases. It represents an opportunity of collaboration across major Sjögren's translational research sites and investigators across the U.S., using a multicenter multidisciplinary model spearheaded by the SICCA project 20 years ago, yet introducing cutting-edge “omics” technologies, and specimen collection protocols greatly updated make them analyzable through the new technologies.

The STAMP project also includes a strong emphasis on succession planning, and the team is highly committed to the development of early and mid-career investigators across the spectrum of clinical, translational, and basic sciences. Finally, the STAMP multidisciplinary clinical sites provide participants with the opportunity to receive a comprehensive Sjögren's evaluation within a single visit, which rarely occurs in the clinical setting. Participants then receive their test results that are necessary for assessment of Sjögren's classification, which may facilitate their enrollment in future clinical trials.