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Your Resource For PBC Education and Support

The Future of PBC

2021 marked the 25th Anniversary of the PBCers Organization. It began when one woman was diagnosed with PBC and in seeking other patients to connect with, chose to form an online support group for those diagnosed with Primary Biliary Cirrhosis (yes, we said cirrhosis, because that was its name in 1996). In those 25 years we have seen many changes: the name becoming Primary Biliary Cholangitis, Patient Education Conferences, updates in how the disease is diagnosed and treated. There are new imaging techniques that have eliminated the need for liver biopsies for some, a second line medication for those not responding or tolerating ursodiol and more treatment options being explored in clinical trials.

The future of PBC depends on the patients! Clinical trials are a critical part of research and require participation of PBC patients who are qualified to participate. We can’t get new treatments unless we, as patients step up to help. We need to help ourselves. Many find it personally rewarding knowing they are helping other PBC patients. The PBCers Organization has partnered with Antidote to help connect patients with trials they qualify for quickly. We have installed a match button from Antidote on our Research page to help patients find and connect with clinical trials. Patient participation in clinical trials is needed to move forward with new treatments.

The PBC Patient registry launched in November of 2019 in partnership with Sandford CoRDS. Gathering patients health histories together provides researchers access to information useful in finding the connections patients share which could lead them to finding the cause(s) for PBC. Enrolling in the registry doesn’t require travel, labs or tests. Each of our histories is important and combining them is POWERFUL. There is more information about the PBC Registry our “areas of Support Page of the website.

You Can Help Us Educate About PBC

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Help Fund Research

 

This is the PBCers Organization’s 25th year. We have chosen to remember our founder, Linie Moore, who we lost in November of 2020 due to pancreatic cancer by establishing a fundraiser in her honor. If you would like to participate, please click this link to donate: Linie Moore Memorial Research Fund. All proceeds are sent to research facilities such as UC Davis under Dr. Eric Gershwin, working to find treatments and someday a cure for PBC. Thank you for your support!

 

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