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February is a special month for me as it marks my one-year anniversary as President and CEO of the Sjögren’s Foundation. When joining the Foundation, I spoke about moving boldly into the future as we continue towards our shared vision of creating a community where patients, healthcare professionals and researchers come together to conquer the complexities of Sjögren's. It has been a transformative year for the Foundation and the accomplishments are significant. Three specific projects that I am very excited about are the recent State of Sjögren’s event, our Living with Sjögren’s national patient survey, and the Pri-Med education program for primary care physicians.

On January 26, 2022, healthcare professionals from a broad range of specialties, researchers, government officials, pharma and biotech representatives joined us for the Foundation’s inaugural State of Sjögren’s. This annual meeting addresses the medical and professional community that cares for Sjogren’s patients and manages clinical trials for a Sjögren’s therapies. Every year, we will focus on a key theme and this year’s theme was, “The Need for Multidisciplinary Communication and Collaboration in Sjögren’s Clinical Trials and Patient Care.”

Communication and collaboration among the many different specialists caring for Sjögren’s patients is critical! Each patient is different, but the average patient sees 4 to 5 physicians a year to manage their disease. For patients who have multiple organ involvement, that number increases.   It is essential that these medical providers are communicating and collaborating for the best patient care. It is also critical that clinical trials involve many of these specialists in order to assess and care for patients throughout the trial period. You will continue to hear about multi-discipline collaboration and communication from the Foundation in the coming years as we work to create a long-term shift in the medical community. Because Sjögren’s is serious, systemic, and prevalent, our medical providers must collaborate to ensure patients receive good care.

The second exciting project is our Living with Sjögren’s patient survey which was conducted in October 2021 and managed by The Harris Poll. The survey was created to gain insight into the experiences of patients, including physical symptoms, as well as the mental, emotional, and financial impact of the disease. A remarkable data point from the survey results shows that over 50% of respondents experience 21 symptoms, highlighting the need for new and systemic therapies for Sjögren’s. Look for more information about this survey in the upcoming months as we create new materials to educate medical providers about the complexity of the disease.  

The Foundation once again partnered with Pri-Med, a leading provider of continuing medical education for Primary Care Providers (PCPs) to deliver a program on Sjögren’s. On February 10th, Spotting Sjögren’s: Keys to Successful Diagnosis for PCPs was part of PrimaryCareNOW, a free two-day live, virtual CME program. The program is now an online CME program for one full year (until February 10, 2023). PCPs can earn 1.00 AMA PRA Category 1 Credits™, 1.00 ABIM MOC or 1.00 AANP, including 0.33 AANP Pharmacology by completing the online activity. Please bring this opportunity to your primary care doctor to help them learn more about Sjögren’s.


Janet E. Church

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