My journey with primary biliary cholangitis (PBC) has led me down the road of advocacy. I always felt that advocating for myself and others with PBC was the one way I could take back control of an uncontrollable situation having this rare disease. I have a new role to add to my advocacy repertoire: I am now the Director of Patient Relations for Friends of the PBC Foundation.
A new nonprofit by patients, for patients
Friends of the PBC Foundation is a new and transformative nonprofit organization for patients with PBC strictly here in the United States. Founded in 2024, Friends of the PBC Foundation was inspired by the PBC Foundation based in the U.K. — an organization that has been serving the global population of patients with PBC for over 30 years.
There are over 130,000 patients in the U.S. alone with PBC, and Friends of the PBC Foundation aims to address the unmet needs faced by these patients. We’re an organization by patients and for patients. Four members on our Board of Directors have PBC, and two members have been deeply impacted on a personal level by this rare but debilitating disease. All have their own unique journey with PBC.
We strive for diversity and inclusion for all. Until recently, the most commonly seen diagnosed patient with PBC was middle-aged white women. We are now seeing a turn in the tide. Every day more and more young people in their 20s and 30s are being diagnosed with this disease. Men are also being diagnosed more frequently. And we know that Hispanic women and women of color are the biggest demographic of undiagnosed patients in the U.S.
At Friends of the PBC Foundation, we are serving all people of all demographics, and we are actively inclusive for all — no matter what part of the PBC journey you are on and no matter what walk of life you’ve been on. You are not alone on this journey, and we are here for you.
A chance for connection: The U.S. PBC Patient Conference
September is PBC Awareness Month, with International PBC Day on Sept. 14, 2025. In honor of PBC month, we are hosting our very first Patient Conference in Chicago, Illinois, from Sept. 19-21, 2025. I’ve spent the last few months helping to plan the conference and I am so excited for it to finally take place.
Our theme this year is “Strength Through Support.” We have many physicians presenting at the conference who are considered PBC specialists. We also have the support of many of the pharmaceutical companies that are involved with the manufacturing of our medications — many of whom will share information at the conference.
Two of the panels I am most excited for are the Healthcare Provider Panel and the PBC Patient Panel. At the HCP Panel, physicians will be answering patient questions, and at the PBC Patient Panel we have several patients on different paths with PBC sharing their personal lived experience. We also have various workshops planned for both patients and their caregivers.
I’m also glad about the steps the Friends of the PBC Foundation has been able to take to put attending within reach of more patients. Because we know traveling can be expensive and can make a conference experience financially impossible for some patients, we have a limited number of Travel Scholarships available to help those patients in need. Attendees can apply for a Travel Scholarship when completing the registration form. We also have a discount on the registration fee for patients who live within a certain mile radius of Chicago.
There is a magnetic feel when you are with others who have PBC. Even if you barely know someone, you feel connected to them like you do know them. Two months after I was diagnosed with primary biliary cholangitis, I had the opportunity to physically meet other patients living with PBC in person. It was a life-changing moment for me. It made me realize that I am truly not alone, and that other people can actually understand how I feel because they feel it too. I still am in heavy contact with some of those women to this day, and consider them to be part of my PBC family. We try to meet up in person when we can.
The Patient Conference will be life-changing for many patients. Our conference will bring together patients, their caregivers, physicians, patient advocates, pharmaceutical industry leaders and more, all together for a weekend. Now is the opportunity to make life-long friendships, gain education, and share your lived experience, live and in-person, with others with PBC. Join us at our first U.S. Patient Conference!
Sign up here to get the latest news, perspectives, and information about PBC sent directly to your inbox. Registration is free and only takes a minute.
