National Health Council — Voluntary Health Agency Guide

Sjögren's Syndrome Foundation

The Sjögren's Syndrome Foundation, founded in 1983, is the nation's foremost source of information about Sjögren's syndrome for patients and health care professionals. A nonprofit voluntary health agency, the Foundation promises to make a difference to the millions of people with Sjögren's syndrome by providing support and education to patients and their families, education for medical professionals, building public awareness of Sjögren's, and funding and encouraging research to find a cause, improved treatments, and a cure.

Support services include responding to more than 100,000 annual queries, referrals to other patients and physicians, sponsoring support groups throughout the country, and publication of a glossary, product directory, and monthly newsletter, The Moisture Seekers. SSF holds both regional and national educational meetings for patients, clinicians, and researchers. The Foundation advances public policy development and advocates on behalf of the millions of Americans with Sjögren's syndrome.

About the condition(s):

Sjögren's ("SHOW-grins") syndrome is a chronic disease in which white blood cells attack the moisture-producing glands. The hallmark symptoms are dry eyes, dry mouth and fatigue, but it is a systemic inflammatory disease that can affect the kidneys, blood vessels, lungs, liver, pancreas, digestive system, peripheral nervous system and central nervous systems. Debilitating fatigue and joint pain can seriously impair quality of life. It is one of the most prevalent autoimmune disorders, striking as many as four million Americans. Nine out of ten individuals with Sjögren's syndrome are women. While most diagnosed women are of menopausal age or older; children, teenagers and young adults also can be stricken with Sjögren's syndrome.