Our Impact

The Foundation began the year with our annual State of Sjögren's which focused on neurological manifestations in Sjögren's with nearly 400 providers and clinicians attending from nine different specialties.

The Foundation partnered with National Jewish Health to provide a CME course for rheumatologists, pulmonologists, neurologists, nurse practitioners, physician assistants, and nurses. The course, “Sjögren's Disease: A Multidisciplinary Approach to Diagnosis & Management” began in September 2023 and will be open for 12 months. Over 1,200 providers have already participated.

The Foundation partnered with Pri-Med to provide a CME course for primary care providers in the United States. The course began in May 2023 and is titled “Diagnosing and Managing Multi-System Sjögren's: More Common than You May Think.” It runs for a full year and has had more than 2,500 providers participate.

The Foundation partnered with PRIME to provide a CME course for rheumatologists, nurse practitioners, physician assistants, and other Sjögren's providers. The course ran for a year and was completed at the beginning of December 2023. It was titled “Optimizing Outcomes for Patients Experiencing ​Systemic Manifestations of Sjögren's Disease”.

At the 2023 American College of Rheumatology (ACR) Convergence, the Foundation had a very large presence. In addition to having a booth in the Exhibit Hall, the Foundation hosted a luncheon for more than 100 attendees with a discussion on the collaborations moving Sjögren's forward. There were also three scientific sessions on Sjögren's, two Sjögren's poster sessions, and 6 posters with Foundation authorship including two on the Sjögren's patient perspective.

In addition to ACR, the Foundation attended and/or presented posters at several conferences throughout the year aimed at different professional audiences and specialty areas. This included the American Autonomic Society Conference, the American Academy of Neurology’s Annual Meeting, the American Thoracic Society’s International Conference, the American Association of Nurse Practitioners National Conference, the Rheumatology Nurses Society, Congress of Clinical Rheumatology West, and the Rheumatology Advanced Practice Providers. The new conferences strategically expanded our presence in support of our multispecialty education efforts and brought awareness and education to large groups of neurologists, pulmonologists, nurse practitioners and rheumatology nurses.

The Foundation guidelines team has been busy this year wrapping up clinical practice guidelines for peripheral nervous system (PNS) involvement in Sjögren’s. The team is made up of rheumatologists and neurologists in addition to the involvement of a cardiologist who provided input on autonomic nervous system dysfunction. Over 50 Best Practices and Recommendations for diagnosis, management and treatment have been drafted and will be reviewed in early 2024 by a Consensus Expert Panel made up healthcare professionals in rheumatology, neurology, and cardiology as well as patients and patient family members, most of whom are in healthcare. Areas covered under PNS include mononeuropathy (such as trigeminal neuralgia and other cranio-facial nerves), polyneuropathy (such as small and large fiber neuropathy, including neuropathic pain and changes in sensation, gait changes and demyelination, and vasculitic neuropathy) and autonomic nervous system involvement (such as postural orthostatic tachycardia syndrome or POTs). Release of the PNS guidelines is anticipated in 2024.

The Foundation is working with companies on provider training and dataset programs and patient marketing programs that include clinical trial awareness and recruitment. Phase 2 clinical trials completed enrollment of participants and new Phase 3 trials for Sjögren’s have already begun recruiting participants in the U.S. and in other countries.

Sponsors of current phase 3 clinical trials are facilitating training primary investigators (PIs) through the ESSDAI Certification Program on the Foundation’s Sjögren’s Training and Education Platform (STEP).

As part of its goal to ensure successful clinical trials in Sjögren’s, the Foundation is heavily involved in two international initiatives to develop better endpoints for measuring success of therapies in clinical trials. NECESSITY is a European-driven project that entered the validation stage this year - the Foundation participates on the scientific committee and the patient advisory council. OMERACT was launched this year and is co-chaired by the Foundation’s Dr. Sara McCoy with Foundation staff co-leading the group on patient-reported outcomes.

A U.S. Clinical Trials Task Force and Corporate Council were created by the Foundation to address barriers to clinical trials in Sjögren’s that are specific to the United States. Chaired by Dr. Daniel Wallace of Cedars-Sinai Medical Center and UCLA, the task force brought clinical trial investigators in rheumatology, ocular, oral, and neurology together so specialists could discuss how best to collaborate on clinical trials, share knowledge about endpoints used by each specialty, and learn from one another. In addition, Corporate members came together to provide their perspectives on barriers faced upon entering the clinical trial space in Sjögren’s. Everyone spent the year discussing potential solutions and strategizing about next steps.

The Foundation continued to lead the International Clinical Trials Consortium (CTC) 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. Our CTC is chaired by Foundation board member Dr. Daniel Wallace who chaired three CTC meetings this year on breaking barriers in clinical trials, new endpoints for systemic disease and for ocular measurements, and ways to best measure patient-reported outcomes when testing a potential therapy. The International Clinical Trials Consortium (CTC) held two virtual meetings and one in-person meeting with principal investigators and corporate members. As part of the CTC, the Foundation also continued to lead and expand our relationship with the Food & Drug Administration (FDA) on behalf of patients and companies.

The Foundation is excited about its collaboration with two major Foundation for the NIH research initiatives: 1) The Accelerated Medicines Partnership® Autoimmune and Immune Mediated Diseases (AMP® AIM) is tearing down old views of Sjögren's to bring a totally fresh approach to understanding the disease; and 2) The Biomarkers Consortium on Sjögren’s is in the planning stages to ultimately identify new markers for Sjögren’s that will change the face of diagnosis, management, and treatment. The Foundation has taken on a major leadership role in both endeavors.

The Foundation revamped our research grants program that included raising the funding amounts for our existing annual Pilot and High Impact grants. We also created a new Dynamic Grant to support time-sensitive, critical work that falls outside of the Foundation’s normal grant cycle and funding opportunities. This year, the Foundation awarded two Pilot Grants to Rachael Gordon, MD, PhD at the University of Pittsburgh and Anat Galor, MD, MSPH at the University of Miami. One High Impact Grant was awarded to Harim Tavares dos Santos, DDS, PhD at the University of Missouri. The Foundation’s first Dynamic grant was presented to Christopher Lessard, PhD at Oklahoma Medical Research Foundation (OMRF) to advance their genetic research on Sjögren’s.

This year, we leaned heavily into advocacy efforts to further improve the lives of all Sjögren’s patients. This included advocating for the Centers for Medicare and Medicaid to include coverage for medically necessary dental care as well as hiring a firm to help us with strategic advocacy efforts with Congress. Our 2024 advocacy efforts will continue pushing these and new initiatives forward!

Efforts Include:

 - Drafting a Resolution to be introduced in 2024 in the U.S. Senate and House of Representatives to raise awareness of Sjögren’s.

- Submitted a statement to U.S. Health & Human Services in response to a Request for Information on increasing patient access to treatments and understanding the high cost of obtaining prescription therapies and over-the-counter (OTC) products.

- Joined the fight with two coalitions working to obtain FSA/HSA coverage for OTC items used to manage Sjögren’s disease.

- Strategizing how to highlight and ensure attention for Sjögren’s as part of two new federal initiatives on women’s health: a new Office of Autoimmune Disease Research at the National Institutes of Health and a White House venture announced this fall to expand women’s health research.   

The Foundation held our annual National Patient Conference virtually in April with 1,400 registrants. We held our Fall Focus Conference virtually in October which focused on “Exploring the Complexities of Oral Health” and had nearly 800 registrants.

The Foundation focused on strengthening and improving the overall support group program. This includes additional support to Support Group Leaders, increased onboard training and new accessible resources. The Foundation also provides an annual update / training meeting for all leaders. There are currently 62 support groups in the United States and four additional focused support groups for women in their 20s & 30s, men with Sjögren’s, childhood Sjögren’s, and for spouses and partners. The Foundation also has more than 100 active Patient Support Volunteers who field calls from patients and are invaluable in letting patients know they aren’t alone.

The Foundation’s Awareness Ambassador program continued to focus on increasing awareness by educating healthcare professionals in their area about the various manifestations of the disease. There are currently 236 volunteers signed up to be Ambassadors. The most recent Spring/Summer program focused on outreach to Primary Care Physicians.

The Foundation continues to produce the bi-quarterly Conquering Sjögren’s newsletter for members that has been expanded to include additional science and research articles for further patient education. The Foundation has also grown the Foundation blog on our website by increasing posts and the type of information it addresses such as clinical trials, advocacy, or patient-to-patient support.

The Foundation launched a new patient-to-patient program which encourages patients to share a specific symptom or aspect of living with Sjögren’s. The stories are meant to put a personal face on the disease, show how they are effectively coping with the disease, and offer advice for others. Hundreds of submissions have already been received and patients have expressed the feeling of not being alone as they read the stories published online and in the newsletter.

The Foundation was thrilled to have the honor of ringing the NASDAQ Closing Bell on April 11, 2023, in recognition of Sjögren’s Awareness Month. Sjögren’s Foundation President & CEO, Janet Church, was surrounded by Sjögren’s patients, Board Members, and physicians at this exciting ceremony.

2023 saw the international community come together to spark change in the language used around Sjögren’s. The Foundation started the drive for change, and the Foundation’s Medical and Scientific Advisory Committee Chair, Dr. Alan Baer, is leading the charge for the U.S. along with Dr. Manuel Ramos Casals of Barcelona for Europe. The patient voice is led by the Sjögren’s Foundation and Sjögren Europe. Consensus was achieved to drop “syndrome” in favor of “disease,” and other terminology is still being debated. Final determinations and publication are expected in 2024.

The Sjögren’s Foundation also continues to work with several groups and coalitions on advocacy related issues to help maximize our reach and ensure the Sjögren’s community’s voice is heard. We have expanded our involvement and become more active in many groups while also representing the patient voice on coalitions and committees. These groups include: 

- National Health Council 
- National Institute of Dental & Craniofacial Research 
- Friends of the National Institute of Dental & Craniofacial Research 
- National Institute of Arthritis & Musculoskeletal & Skin Diseases Coalition 
- American Association for Dental Research  
- ARPA-H 
- Autoimmune Association 
- Research America 
- Association for Accessible Medicines 
- Alliance for Patient Access 
- Pulmonary Hypertension & Associated Conditions 
- NIH Autoimmune Disease Coordinating Committee 
- Consortium for Medically Necessary Oral Health Coverage 
- Childhood Sjögren’s International Working Group