PBC Ireland
Primary Biliary Cholangitis
Welcome to PBC Ireland!
PBC Ireland is a dedicated support 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. We also advocate for greater awareness, better care, and improved access to emerging treatments for the PBC community in Ireland. In addition, we actively connect with the international PBC community to stay informed about global research and advancements.
Whether you're a patient, caregiver, or simply looking to learn more, you are warmly welcome. To join the conversation and find support, please visit our private Facebook group: PBC Ireland.
Why was the group formed?
After struggling to find any PBC support groups in Ireland or any information about the availability of new PBC medications, I decided to create this group. It also became clear that the voice of PBC patients in Ireland was missing. The goal of this group is to share relevant, Ireland-specific information about PBC, to connect people living with the condition, and to give the PBC community in Ireland a stronger voice. Healthcare systems vary significantly from country to country, and Ireland is no exception. An Irish-focused PBC group helps fill the gap in localised support, connection and reliable information.
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.
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
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