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Home » Rare diseases » Primary biliary cholangitis symptoms, support and campaign for better care
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Robert Mitchell-Thain

CEO, PBC Foundation

Learn about primary biliary cholangitis (PBC), a rare autoimmune liver disease. Discover where to find global support, be part of advocacy and join initiatives to improve care.


Primary biliary cholangitis is a rare autoimmune disease that affects the bile ducts within the liver. In simple terms, the body’s immune system mistakenly targets and attacks its own liver cells. Essentially, the immune system becomes confused and perceives healthy liver tissue as harmful, resulting in inflammation and damage.

Managing rare autoimmune disease PBC

When diagnosed and treated early, PBC can be managed effectively, allowing individuals to lead full, healthy lives with a normal life expectancy. However, if the disease is not detected in time or treatment is delayed, it can progress to liver failure.

Symptoms often include chronic fatigue, which can be debilitating, and intense itching under the skin. These symptoms are just a few of the challenges that people with PBC may face. PBC primarily affects women, as the majority of those diagnosed are female.

The basics — such as blood tests,
the right medicine dose and scans
— can all help to prolong the
life of those living with PBC.

Seeking PBC support and information

Early intervention is key to managing the disease and ensuring a better outcome, so recognising symptoms and seeking help promptly can make all the difference. The PBC Foundation, based in the UK, supports over 18,000 patients from almost 90 countries around the world. It provides support, information, peer networks and advocacy in healthcare and policy, as well as facilitates and supports research.

International campaign for PBC care

In 2025, the PBC Foundation is leading the international campaign called Project 90/90. The foundation is using this campaign to ensure that 90% of PBC patients can access 90% of the care standards highlighted in international guidelines. The basics — such as blood tests, the right medicine dose and scans — can all help to prolong the life of those living with PBC.

The foundation is working hard to ensure as many patients as possible not only have these checks but are also assessed and supported in their symptom burden. If you are affected by PBC, come and register with us for free. You, too, can be part of Project 90/90 just by asking your GP about PBC.

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