@burlingtongirl You might try contacting the Genetic and Rare Diseases organization. They may be able to help you find a doctor. You may need to go to Seattle once or twice and then rely on virtual meetings.
https://rarediseases.info.nih.gov/
Also, see this newsletter for Sjogren's. . https://www.sjogrensadvocate.com/
Will you let me know if you have any success?