PSC PARTNERS SEEKING A CURE
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Mission Statement
The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.
About This Cause
We are working together to provide research, education, and support for people affected by primary sclerosing cholangitis, a rare liver and bile duct disease of unknown origin and with no effective treatment. PSC often occurs with ulcerative colitis, Crohn’s disease, and related gastrointestinal and autoimmune diseases. PSC Partners Seeking a Cure, a 501(c)(3) non-profit, is the leading patient- and caregiver-led organization dedicated to PSC. Since 2005, PSC Partners has raised over $3 million in support of its mission to research the origins and a cure for the disease. PSC Partners annual conference for education and support is affiliated with the most prominent PSC academic and research centers in the US. The conference has grown into the largest gathering of PSC patients and caregivers in the world. PSC Partners Seeking a Cure is a true working partnership between PSC patients, caregivers, physicians, nurses, nutritionists, pharmacists, and researchers. Together, we form a unique community in support of PSC patients and caregivers, offering hope to all. Our vision is a world without primary sclerosing cholangitis (PSC). Basic Facts About PSC: Primary sclerosing cholangitis (PSC) causes the bile ducts inside and outside the liver to become scarred, narrowed and eventually blocked. As more and more ducts are blocked, bile becomes trapped and damages the liver. The damage, if left unchecked, causes liver cell death and may eventually require a liver transplant. PSC is a rare disease that predominantly affects males ages 30-40 years old. About 43 percent do not have any symptoms when they are diagnosed. It is estimated that nearly 21 per 100,000 men and 6 per 100,000 women have the disease. PSC is often found in people with inflammatory bowel disease (IBD), most often ulcerative colitis (UC) and sometimes Crohn's disease. Over 75 percent of PSC patients have ulcerative colitis. PSC is also associated with other autoimmune diseases. No one knows what causes PSC. There may be genetic, autoimmune, and environmental origins. It isn't contagious. There may be a genetic predisposition to PSC; however, most children of PSCers are healthy and unaffected. There are medications and procedures that can help relieve some aspects of the disease and symptoms, but the only current treatment is a liver transplant. Even in some who receive a transplant, PSC symptoms return. Still, many PSCers can live long and productive lives with the disease and may never need a transplant. PSC Partners is committed to finding effective treatments and a cure for PSC. Learn more at www.pscpartners.org.