• Sarah Schafer, MD

Sjogren's Foundation speaks for us!

Why do I refer to the Sjogren’s Syndrome Foundation (SSF) website, www.sjogrens.org, so often?

Because it is such a great resource for up-to-date Sjogren’s information! The SSF has a much broader mission than Sjogrens Advocate, which focuses on strategies to improve diagnosis and care.

The SSF is unique!

  • SSF is the only non-profit organization that serves Sjogren’s in the United States!

  • “We were founded by a patient, for patients, and we will always be about the patient.” ~ Steve Taylor, CEO

  • SSF has a Board of Directors that is comprised of 40% patients, 40% healthcare providers/researchers and 20% other. In addition, there are hundreds of Medical Advisors and our healthcare professional volunteers that contribute to SSF work. Patient input is included in nearly 100 % of SSF activities.

Other websites often miss the mark: Websites from seemingly reliable organizations such as the American College of Rheumatology often do not reflect current Sjogren’s knowledge. It is no wonder that patients get mixed messages from rheumatologists. The SSF has been instrumental in helping shift from the incorrect view of Sjogren’s as a nuisance dryness condition to the evidence-based reality that Sjogren’s is a serious systemic disease.

My personal experience:

As a volunteer, writer and medical educator, I can attest to the high level of knowledge and dedication of the SSF staff, as well as the consistently reliable content of their website.

I had the honor of serving as a patient representative on the team that created Phase 1 of the Clinical Practice Guidelines (CPGs). It was inspiring to see the dedication of so many expert clinicians who put in countless volunteer hours to create these much needed guidelines. Without the leadership of the SSF and Kathy Hammitt, these CPGs would not be possible!

Please share these CPGs with your clinicians!

I plan to highlight specific resources and activities of the SSF in future posts. Know that your donation to this amazing organization can directly impact research, medical education and the development of better treatments.