Primary Sclerosing Cholangitis (PSC) is a rare disease of the bile ducts, involving an inflammation of the bile ducts (due to unknown causes).The scar tissue as a result of this inflammation narrows the bile ducts, as a result of which bile might flow back to the liver. At that point, bile is toxic and can destroy the liver. As yet, there exists no medication that can cure PSC. The primary symptoms of PSC are, among others, (debilitating) fatigue, pruritus (intense itching) and jaundice. As a result, the patient’s quality of life is often low. Children and adults can have PSC. The estimated median survival rate from diagnosis until liver transplantation or PSC-related death is currently 21 years.
PSC Patients Europe (PSCPE) was founded in November 2014, as a 'new style'patient organisation: a pan-European disease-specific foundation, often complementary to the already existing national Patient Organisations (PO's), which are frequently organ-based PO's (e.g. liver foundations, liver patient associations etc.).
