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.
“I think it's really, really valuable to communicate with other people who are going through the same things as you are.”
— Diana, Arizona
“But the lifeline for me was actually joining the PBC Foundation and definitely getting that contact list of other people that are in my area and giving one of them a call...”
— Wendy, England
The mission of this U.S.-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, their caregivers, friends and families, cope with PBC and improve the quality of their lives through education and support.
Address: PBCers Organization, 1430 Garden Road, Pearland, TX 77581
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
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
There are many helpful resources on this page, but your own healthcare team is the most important resource for your journey with PBC.
Create a personalized conversation guide by taking an easy online quiz at MyPBCCoach.com. Bring the guide with you to your next appointment to discuss a PBC management plan with your healthcare team.
Visit the following websites for more information about PBC
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 (U.S. National Institutes of Health)
A US government website that serves as a registry and database for clinical studies that happen around the world
A nonprofit medical practice and research group that provides information about a variety of medical conditions, 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 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 program 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