Have any questions?
+44 1234 567 890
Primary biliary cholangitis (PBC) - a disease with many faces
In PBC, the small bile ducts in the liver are damaged by autoimmune processes. If left untreated, this can lead to an inflammatory process that also affects the surrounding liver cells and can lead to scarring of the liver tissue (cirrhosis).
PBC is one of the rare diseases and has very different distributions around the world. In Germany, the number of PBC patients is estimated at around 35,000, of whom around 30,000 are in therapy. The majority of those affected are middle-aged women. The therapeutic options to prevent progression of PBC are good, but there is still a clear need for action in the area of symptom management.
Examples of our project work
Patient survey
There is little data on the quality of life of PBC patients. There is also a lack of data on which self-management strategies reduce the burden of symptoms and thus have a positive impact on quality of life. Kautz5 collected this data for the first time.
www.pbcnews.info
The central information platform was revised in close cooperation with patients.
Online seminars and PBC brochure
Together with the PBC community and German-speaking patient organizations, a series of seminars was developed that sheds light on aspects of the disease that are not usually addressed.