If you’re living with primary biliary cholangitis (PBC, previously called primary biliary cirrhosis), you know the impact it can have on your life. It can be difficult to cope with a disease that’s rare and not many people know about. Raising PBC awareness is important for people living with the condition. It can help contribute to funding and research for the condition. It can also help educate more people about the signs of this often asymptomatic liver disease.

While PBC is relatively rare, it’s one of the most common autoimmune diseases. According to the National Organization of Rare Disorders (NORD), about 1 out of every 1,000 women over the age of 40 are diagnosed with this liver disease. It’s most common in women, but more men are getting diagnosed with it too.

If you have PBC, here are some ways you can contribute to raising awareness about the condition.

1. Acknowledge PBC Awareness Month

September is PBC Awareness Month. This is a designated time to help raise awareness about PBC. Furthermore, International PBC Day occurs every year on the second Sunday in September.

If you’re interested in participating, check resources like PBCers Organization to see if they’re hosting any awareness events or efforts.

2. Advocate for Yourself and Speak Up

Although being a famous person may provide a larger platform for spreading PBC awareness, anyone can speak up about PBC 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, attend events, and more. The more you talk about PBC, the more people will know about it and will recognize it if it affects someone close to them.

If you’d like to speak up on a smaller scale, start a personal blog about your experience living with PBC or share your experiences on social media. Another option is chatting about your experience with others on myPBCteam, the online support network for those 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 in a flare or your energy is low, you may want to choose a different way to advocate for PBC.

3. Sign and Circulate a Petition

As of July 2024, the United Kingdom-based PBC Foundation has an online petition that raises concerns about the structure of specific clinical trials for a potential PBC treatment, obeticholic acid (OCA). The petition requests that future trials be designed differently, ensuring all participants receive the drug instead of a placebo (fake treatment). It also emphasizes the importance of considering perspectives and experiences of people living with PBC in regulatory decisions and requests continued access to OCA as part of PBC treatment.

While this treatment may not specifically apply to you, you can sign the petition in support of all people living with PBC. You can also look for petitions that would be more specific to you, or even start one of your own.

4. Learn All You Can About PBC

Learning more about PBC will help you know what to say when people ask you about it. The American Liver Foundation has a web page of straightforward facts about the condition. Knowing these will help you quickly answer questions and show people how PBC is different from other liver conditions.

You can also direct medical staff to pages like these. If they don’t know about PBC, you can help them learn. That way, they’ll be better able to help not only you but anyone else they come across who has been diagnosed with PBC.

5. Donate Time or Money

Even if you don’t have much energy, you can donate money to organizations fighting for people with PBC. You may not feel like you have a lot to give, but every dollar counts.

If you have the energy, donating your time to fundraising and events can help, too. You’ll not only work to improve life for everyone living with PBC, but you’re likely to meet others who also live with the condition.

6. Talk to Your PBC Care Team

If you want ideas about raising awareness for PBC, talk to your PBC care team. The hospital or care center you go to may have awareness efforts or may be able to connect you with helpful resources. Oftentimes, hospitals have resources around disease awareness, but you have to ask about them. They may also be able to connect you with others living with PBC.

The American Liver Foundation has different resources and services for people with PBC. You can call them or use their online chat option.

Talk With Others Who Understand

On myPBCteam, the social network for people with primary biliary cholangitis and their loved ones, members come together to ask questions, give advice, and share their tips with others who understand life with primary biliary cholangitis.

Are you interested in raising PBC awareness? Do you currently engage in awareness efforts for PBC? Share your experiences in the comments below, or start a conversation by posting on your Activities page.