PBCers Organization

09/04/2026

Since her Primary Biliary Cholangitis (PBC) diagnosis, Rebecca has remained guarded. She worries that disclosing it will lead to an unfair and inaccurate assumption: that she's a drinker, now dealing with the consequences.
On top of that, she says PBC is genuinely difficult to explain to someone who's never heard of it, so privacy has become a form of protection for her rather than avoidance.
Her experience reflects some of the clearest patterns to come out of our recent Voice of PBC survey: 53% of individuals with PBC have been dismissively told their condition is caused by alcohol or drugs, and only 30% feel comfortable disclosing their diagnosis outside of close family.
Her story spotlights the ongoing need to break down stigma around liver disease. This PBC Awareness Month, be part of the voices breaking the silence.

09/02/2026

We asked individuals living with Primary Biliary Cholangitis (PBC) what concerns them most about living with this disease. Their answers varied but landed on a common theme: fear of the unknown.
From disease progression and quality of life, to access to care in underserved communities, to simply wanting the best possible healthcare, their concerns span the full spectrum of living with PBC.
These individual concerns map directly back to our recent Voice of PBC survey where 73% of respondents cited fear of disease progression as their top concern, and 51% pointed to uncertainty about the future as their most significant daily challenge.
Watch, share, and help us change the conversation this PBC Awareness Month.

09/01/2026

One word. Infinite stories.
We are asking people living with Primary Biliary Cholangitis (PBC) to describe their experience in a single word. Together, their answers paint a picture of a disease that's as complex as the people living with it.
Today marks the start of PBC Awareness Month, and we're kicking off our Voices of PBC campaign. All month long, we'll be sharing real patient voices, unveiling results from our recent nationwide patient survey, and shining a light on what everyone should know about this often invisible, misunderstood disease.

Read about the survey results in our press release: https://www.globenewswire.com/news-release/2026/09/01/3354228/0/en/patients-suffering-from-primary-biliary-cholangitis-pbc-push-back-on-stigma.html

09/01/2026

September is PBC Awareness month with September 13th being International PBC Day. While we have made progress in gaining recognition of PBC we still need to increase awareness. We are doing a campaign this year “The Voice of PBC” which included a survey and video interviews with patients about their disease that will be posted throughout the month here and in our website. Please share them publicly . I am also sharing with you graphics you can post on your public pages to increase awareness. Share your story and put a face to PBC!

08/27/2026

Posting for our Alliance Partner, The PBC Research Foundation:
Calling PBC patients who want to make a change! We are enrolling all patients in our IRB approved, longitudinal study/patient registry. This study is different in that WE, as PBC patients, own our own data.

Please see the graphics for more information and FAQ. Let us know you are interested in the comments and one of our patient research coordinators will contact you personally! Not survey savvy? No problem, we can set up a call and/or virtual appointment and walk you through it all and it is all HIPAA compliant. Prefer to register on your own? See link in the graphic!

08/25/2026

An article on a topic not usually discussed but important. While the article refers to MASH it also applies to PBC.

Chronic liver diseases like MASH can lead to sexual health problems, making physical intimacy a challenge, writes columnist Kathryn Hudson.

08/24/2026

While this article is aimed at Fatty liver disease many of us also show fat in our liver and the suggestions on a healthy diet do apply to PBC.

08/24/2026

Many of us experience hair loss and blame urso (which can be a cause) but this article shows it can also be liver disease itself.

Hair loss is a common symptom of liver disease, but treating the underlying condition and implementing lifestyle changes can help.