Learn The BasicsPrimary biliary cholangitis (PBC) is a rare disease that affects the bile ducts and causes liver damage as it progresses. There is currently no cure for the disease, but research is ongoing to develop new potential treatments.
There are many associations and organizations that offer support for people living with PBC and provide information about ongoing research in the field.
The PBC Foundation
The PBC Foundation is the largest PBC patient support organization in the world, supporting people living with the disease in more than 80 countries.
The aim of the foundation is to provide information and to raise awareness about the disease, advocate for patients living with the disease and facilitate and drive research into the cause and treatment.
The website of the foundation includes information about the disease, self-care tips and support for the friends and families of patients. It also contains information about ongoing clinical trials for PBC.
PBCers
PBCers is an organization that was set up by Linie Moore, who was diagnosed with PBC in 1995. Linie’s aim was to connect with other patients with the disease and form a support group.
Today, PBCers has many volunteers working together to offer help and support for people living with PBC around the world. The website contains information about local PBC groups, patient registries and finding a PBC specialist.
The American Liver Foundation
The American Liver Foundation is a non-profit organization with a mission to promote education, advocacy, support services and research for the prevention, treatment and cure of liver diseases.
The foundation’s website has a section dedicated to autoimmune liver diseases and PBC in particular. Here, there are tips for people newly diagnosed with PBC, including questions to ask your doctor and information on support groups.
The British Liver Trust
The British Liver Trust website also contains specific information about PBC, including PBC facts, symptoms and diagnosis, treatments and support groups.
There is also information about the UK-PBC project, a collaboration between patient groups, doctors, scientists and others in the industry to increase understanding about and treatment for PBC.
The Canadian Liver Foundation
The mission of the Canadian Liver Foundation is to fund research to improve the diagnosis and treatment of Canadians living with liver disease.
The section of the foundation’s website dedicated to PBC includes information about the disease, treatment options, how to pay for medication, self-care and information on support groups.
The National Organization for Rare Disorders (NORD)
The mission of the National Organization for Rare Disorders (NORD) is to improve the health and well-being of people living with rare diseases by driving advances in care, research and policy.
The NORD website includes a report about PBC that contains information about signs and symptoms of the disease, its causes, affected populations, disorders with similar symptoms, diagnosis, standard therapies and clinical trials and studies. The website also has information about programs, resources and patient organizations that support people living with PBC.
Reviewed by Kyle Habet, M.D., on December 14, 2023.
