You are not alone—reach out to others to find support in your area

There are groups and organizations dedicated to supporting people with primary biliary cholangitis (PBC), formerly known as primary biliary cirrhosis, all over the world. Follow the links below to find out more about each group.

Visit the following websites for more information about PBC

PBCers Organization

The mission of this US-based organization is to unite people diagnosed with primary biliary cholangitis (formerly known as primary biliary cirrhosis), which is a progressive chronic liver disease. The organization helps PBC patients and their caregivers, friends, and families cope with PBC and improve the quality of their lives through education and support.

Address: PBCers Organization c/o Carol Roberts, 1014A Greenleaf Road, Rochester, NY 14612


PBC Society

A Canadian organization with regional groups that provide support and encouragement, education and information, and fundraising for research on PBC

Address: Canadian PBC Society, 4936 Yonge Street, Suite 221, Toronto, Ontario M2N6S3


PBC Foundation

A UK-based patient organization with nearly 10,000 members that provides support to people around the world who are living with PBC, as well as their families and friends

Address: The PBC Foundation, 2 York Place, Edinburgh EH1 3EP


Though not specifically about PBC, the following websites have PBC-related information you may find helpful

American Liver Foundation

A national organization for patients, families, and professionals that is dedicated to the prevention, treatment, and cure of liver diseases such as PBC

Address: American Liver Foundation, 39 Broadway, Suite 2700, New York, NY 10006

Clinical Trials (US National Institutes of Health)

A US government website that serves as a registry and database for clinical studies that happen around the world

Mayo Clinic

A nonprofit medical practice and research group that provides information about a variety of medical conditions, including PBC

Medline Plus

A website that provides health information for people with PBC and other diseases as a service of the US National Library of Medicine

Address: US National Library of Medicine, 8600 Rockville Pike, Bethesda, MD 20894

Medicine Net

A website written by doctors and aimed at people with PBC and their caregivers, and includes comments from people with PBC

National Organization for Rare Disorders (NORD)

An organization that provides services, such as advocacy and education, to help improve the lives of people with rare diseases

Address: National Organization for Rare Disorders, 55 Kenosia Avenue, Danbury, CT 06610

National Digestive Diseases Information Clearinghouse

A website that provides information on digestive diseases, including studies recruiting people with liver disease, provided by the National Institute of Diabetes and Digestive and Kidney Diseases

Address: National Digestive Diseases Information Clearinghouse, 2 Information Way, Bethesda, MD 20892-3570

The University of Chicago Medicine Liver Disease Patient Resources

An online library containing information about the liver and liver disease, including information for people with PBC

Address: University of Chicago Medicine, 5841 S. Maryland Avenue, Chicago, IL 60637

The Community Liver Alliance

The Community Liver Alliance builds bridges by connecting patients to healthcare providers and services; creating and conducting screenings, educational workshops, and seminars; coordinating support groups; investing in local research; sponsoring a patient assistance fund; supporting the Children’s Hospital of Pittsburgh youth transplant camp; working with local media and community groups to increase awareness of liver wellness and liver disease; and meeting with local, state, and federal policy makers to initiate positive change.

Address: Community Liver Alliance, 100 W. Station Square Drive, Suite 1930, Pittsburgh, PA 15219

Phone: 412-501-3CLA



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