SUPPORT & CLINICS
Join these groups to share ideas, information, and resources.
Support groups can help you feel connected to the broader Sjogren's community. However, please remember that they do not substitute for medical advice. Please use your own judgement when deciding what is useful to you. Overall, I find the participants to be wise and generous. They continue to inspire me to work on Sjogren's Advocate.
Smart Patients www.smartpatients.com/sjogrens
Large numbers of newly diagnosed patients and more seasoned patients participate in this site. Most patients are based in the U.S. but three are members from all over the world.
The main moderator, Robin, is not a Sjogren's patient, but has a deep understanding of chronic illness and experience with patient advocacy. She often posts links to pertinent articles and other resources on the site.
Robin has administered patient health groups on line since 1997, first as a volunteer and now as the coordinator of the online communities at Smart Patients. She says, "The Sjogren's community has been a joy ever since it started. It quickly became apparent patients were eager to share experiences and learn more about this condition which the medical community has neglected for so long."
Free membership is required to join the community and its private discussions.
SSL email listserv
Long standing Sjogren's discussion-and resources-created by David Dryden, a fellow Sjogren's patient.
Local support groups, in-person and online.
These can be particularly useful for local referrals and resources. For more information, contact the Sjogren's Foundation or see https://www.sjogrens.org/home/get-connected/support-groups.
Sjogren's Clinics
UC Berkeley Sjogren's Center (Located at the Eye Clinic)
A multi-specialty approach to diagnosis and management strategies for Sjogren's by an expert team:
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Dr. Nancy Carteron, rheumatology
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Dr. Ava Wu, dental/ oral
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Dr. Nancy McNamara, optometry/dry eye disease specialist.
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This clinic provides consultation or second opinions for the patient's treatment team. Other dry eye disease, ongoing management of Sjogren's disease is not available.
Johns Hopkins Sjogren's Center
Provides diagnosis, consultation and in some cases, ongoing care for Sjogren's disease. Because Johns Hopkins is a Sjogren's research center, patients who don't meet the current version of the Sjogren's Classification Criteria may not be eligible for the ongoing care, but may be offered an evaluation or second opinion.
Reminder: Classification criteria are important for standardizing research populations but do not substitute for clinical judgement for diagnosis. Patients who present with systemic (non-sicca) manifestations, especially neurological, often wait for years before they finally meet the classification criteria.
See this section to learn more about Sjogren's diagnosis.
Penn Medicine Sjogren's Syndrome Center
Please ignore the homepage information which states, incorrectly, that 25% of patients have systemic manifestations. Systemic (non-dryness) features are found in almost every patient who receives a comprehensive evaluation.
Dr. Chad Johr leads this program and is knowledgeable about Sjogren's, although it is unclear if this program follows patients with a clinical picture who do not meed the classifcation criteria for Sjogren's.
Sjogren's Clinical Trials
Clinical trials and Sjogren's.
Learn more about how you can participate in studies that are looking at potential new Sjogren's treatments.
Disability and Social Services help- U.S.
How to Get On Blog While this blog is written for ME/CFS patients, it is also helpful for people living with Sjogren's.
Workplace Accommodations Written for dysautonomia patients, but much of it applies to Sjogren's. Many Sjogren's patients have dysautonomia, often undiagnosed.
Updated 04-17-2023