We encourage people with Sjögren's syndrome and their loved ones to communicate with their elected officials. If you develop a good relationship with your elected officials and they get to know you, they will know about Sjögren's syndrome. A personal visit, letter, email, or call are effective means of communicating with your legislators. Here are some tips to getting started:

• Keep informed about the legislation important to those with Sjögren's syndrome by visiting this website and reading the Foundation's newsletter, The Moisture Seekers.



• Call the Foundation if you want more information on any of the legislation mentioned in its communications.



• If you are a medical professional, relate your experience with how Sjögren's affects your patients. Mention the beneficial research that has already been done and what could be done in the future that could have a major impact on those with Sjögren's.



• Tell your legislators up front why you are in contact and what you are asking them to support.



• Let them know that you are a constituent and provide your home address.



• Mention that you are one of many people with Sjögren's syndrome in the district. Indicate if there are support groups in the legislator's jurisdiction.



• Briefly define Sjögren's syndrome, including the facts that it:
  
  
  • Affects up to 4 million Americans
  • Strikes mostly women, with a ratio of female to male of 9 to 1
  • Takes an average of 6 years from onset of symptoms to diagnosis
  • Crosses many specialties and is often misdiagnosed



• Personalize your approach - tell how Sjögren's syndrome has affected your quality of life, family and work. If relevant, explain how advances in research have helped you.



• Mention the Foundation and provide a copy of our materials on Sjögren's. (Call 301-718-0300 for copies).



• Summarize why a legislator's support for a particular bill is important.



• Ask where the legislator stands on the issue.



• ALWAYS end a letter with a thank you for the legislator's interest and follow up a visit with a thank you note.

Finally, let the Sjögren's Syndrome Foundation know you are helping to stand up for the rights and needs of the many people who suffer from Sjögren's.

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