September is PBC Awareness Month — a designated time to help raise awareness about PBC. International PBC Awareness Day also takes place in September, and the American Liver Foundation marked the 2024 observance on Sept. 8 by encouraging people to learn the facts and warning signs of PBC.

For the 2026 awareness season, PBC organizations highlighted the lived experience of people with PBC. The PBCers Organization released a national Voice of PBC survey of 210 people living with PBC and reported that many respondents described stigma, fatigue, and fear about the future as part of daily life with the condition.

If you’re interested in participating, check out resources from groups such as the PBCers Organization, the American Liver Foundation, or Friends of the PBC Foundation to see whether they’re hosting events or campaigns.

Famous people may have a larger platform for spreading PBC awareness, but anyone can speak up and make a difference. If you want to make an impact, reach out to local reporters and news stations. Offer to do interviews, write articles, or attend events.

The more you talk about PBC, the more people will know about it. That may help people recognize it if someone close to them is diagnosed.

If you’d like to speak up on a smaller scale, start a blog about what it’s like to live with PBC, or share your experiences on social media. Another option is chatting with others on myPBCteam, the online support network for people living with the condition.

Speaking up can be stressful, so make sure you’re feeling well before you decide to take this path. If you’re feeling unwell or low on energy, you may want to choose a different way to advocate for PBC.

Learning more about PBC can help you know what to say when people ask you about it. The American Liver Foundation has a PBC information page with facts about symptoms, diagnosis, treatment, and support resources.

Knowing these details can help you answer questions and show people how PBC differs from other liver conditions. You can also point people toward reliable resources if they want to learn more.

Reading about the latest PBC research may also help you talk about new developments in a grounded way. If people ask about day-to-day symptoms, you might share information about topics such as brain fog and PBC.

Even if you don’t have much energy, you can support organizations that help people with PBC. For example, the PBCers Organization says its mission includes offering education and support, raising funds for research, raising public awareness, and hosting national conferences for people with PBC and their loved ones.

Friends of the PBC Foundation provides support, education, and advocacy for people living with PBC in the U.S., in partnership with the PBC Foundation in the United Kingdom. In 2025, Friends of the PBC Foundation also presented a patient-led AASLD session on unmet needs in the U.S. PBC community and how to address them in 2026 and beyond.

If you want to get involved, look for organizations that match your goals and interests. You may be able to donate, volunteer, attend a virtual event, share educational materials, or help promote an awareness campaign.

Another way to raise awareness is to help researchers learn more about PBC. The PBCers Organization created a patient registry with CoRDS, the Coordination of Rare Diseases at Sanford, to support research and treatment for people with PBC.

A registry can collect information from many people with the same condition. PBCers says researchers may use registry information to look for patterns, identify people who may be eligible for clinical trials, and better understand PBC.

Taking part in research is a personal choice. If you’re thinking about joining a registry or clinical trial, talk with your PBC care team about the possible benefits, risks, privacy protections, and time commitment.

If you want ideas about raising awareness, talk to your PBC care team. The hospital or care center where you receive care may offer programs or resources to support awareness, but you might need to ask for them. Your care team may also be able to connect you with others living with PBC.

The American Liver Foundation has resources and support services for people affected by PBC, including a helpline, online chat, peer support, support groups, and educational webinars. You can ask your care team whether they recommend these or other resources.