PBCers Organization

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.

08/24/2026

So many members dealt with edema I wanted to share this article. Liver Disease News has many articles relating to PBC that I post here but you can also sign up for their newsletter yourself if you want!

Learn how to manage edema in liver disease with diet, medication, and lifestyle tips to reduce swelling and prevent complications.

08/17/2026

UPDATE : They have filled the positions. I received a thank you from the company and they were very appreciative of the response!

Dear PBCers Community,
As many of you know, the treatment landscape for PBC continues to evolve, bringing new hope through therapies that are designed to better address the needs and challenges faced by people living with this disease.
One of our trusted partners has asked us to share an opportunity to participate in an independent market research study focused on understanding the real-life experiences of individuals living with PBC. The purpose of this research is to learn more about patients' treatment journeys, the challenges that remain, and perspectives on a potential new therapy that is currently in late-stage clinical development. Insights from this study will help ensure that future treatment development and patient support efforts are informed by what matters most to people living with PBC. The PBCers Organization has reviewed the survey questions and payment process to assure those participating will be protected.

They are looking for approximately 20 adults diagnosed with PBC who are willing to share their experiences. Participation is completely voluntary, and all information shared will remain strictly confidential. Individual responses will never be identified or shared with the sponsoring organization; all findings will be combined with those of other participants and reported only in summary form.
If you are interested in participating, please click the screening survey link below. The brief questionnaire will determine whether you are eligible for the study and provides additional information about the research, including what participation involves, the time commitment, and participant compensation. This is the first step to participate - a screening to determine who qualifies so they need more than 20 to apply!

The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.

08/09/2026

Join us for lunch and sharing with others living with PBC on Saturday August 22nd in Detroit. Free event - registration required.

Join us for a presentation on PBC, enjoy Lunch and spend the afternoon connecting with other people living with PBC.

08/06/2026

https://patientworthy.com/2026/08/05/fda-grants-breakthrough-therapy-designation-to-pemafibrate-for-primary-biliary-cholangitis/

FDA Grants Breakthrough Therapy Designation to Pemafibrate for Primary Biliary Cholangitis Post author:Austin Newman Post published:August 5, 2026 Post category:Primary Biliary Cholangitis As reported on PR Newswire, the US Food and Drug Administration has granted Breakthrough Therapy designation to...