There are worldwide groups and organizations dedicated to supporting people with primary biliary cholangitis (PBC), formerly known as primary biliary cirrhosis.
Follow the links below to find out more about each group.
A US-based organization whose mission is to unite people diagnosed with PBC. The organization helps 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
Email: pbcers@pbcers.org
A Canadian-based 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
Email: info@pbc-society.ca
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
Email: info@pbcfoundation.org.uk
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
A US government website that serves as a registry and database for clinical studies that happen around the world.
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
A nonprofit medical practice and research group that provides information about a variety of medical conditions, including PBC.
A website written by doctors that provides medical information on various topics, including PBC.
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
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
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, 7 Kenosia Avenue, Danbury, CT 06810
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
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