PBC Ireland
Primary Biliary Cholangitis

Welcome to PBC Ireland!

PBC Ireland is a dedicated support, research, and advocacy group for people affected by Primary Biliary Cholangitis (PBC) in Ireland. Founded by Gerry Nesbitt on 8th May 2025, the group aims to provide up-to-date news, reliable information, and support to those living with PBC. A core part of our mission is to advance research and improve understanding of PBC by supporting patient-led research initiatives and contributing to international research efforts. We also advocate for greater awareness, better care, and improved access to emerging treatments for the PBC community in Ireland, while connecting with the global PBC community to stay informed about the latest scientific developments.

If you have been diagnosed with PBC and live in Ireland, you are warmly welcome. If you have recently been diagnosed with PBC, visit our Newly Diagnosed Patient Information page. To join the conversation and find support (and you live in Ireland), please visit our private Facebook group: PBC Ireland.

What is Primary Biliary Cholangitis?

PBC is a long-term autoimmune liver disease in which the body’s immune system mistakenly attacks the small bile ducts inside the liver. These tiny ducts normally carry bile, a digestive fluid that helps break down fats and remove waste products, out of the liver. When the ducts become damaged, bile can build up in the liver, a process called cholestasis. Over time, this may cause inflammation and scarring of liver tissue. PBC usually develops slowly, and many people can live well for many years with appropriate treatment and monitoring. Early diagnosis and regular follow-up with a liver specialist help manage the condition and reduce the risk of complications.

PBC is a rare autoimmune liver disease that typically develops between the ages of 40 and 60 and affects women far more frequently than men (about 9 in 10 people diagnosed are women). The incidence in Europe is estimated to be approximately 1-3 new cases per 100,000 people each year (prevalence rate 20-40 cases per 100,000).

What are our current areas of focus?

• Monitor the progress of two new PBC treatments:
  • Elafibranor (Iqirvo®)
  • Seladelpar (Lyvdelzi®)
• Establish a PBC Patient Registry in Ireland.
• Collaborate with other rare disease organisations.
• Advocate for the expansion of the Long-Term Illness (LTI) Scheme to include chronic liver diseases like PBC.
• Commence informal meet-ups in Dublin and other locations.

Updates are posted to our private Facebook page and WhatsApp group.

Friends of PBC Ireland

PBC Ireland is all about working across the whole PBC community to make sure the patient voice is heard, valued, and genuinely represented. We team up with grassroots, patient-led groups and with policy leaders, both local and global, because that's how real progress happens. Our aim is to help build a more connected, supportive and empowered PBC community, here in Ireland and around the world.

ICD-10: K83.0, K74.3 | ICD-11: DB96.1 | SNOMED: 31712002 | OMIM: 109720 | Orphanet: ORPHA:186