PBC Ireland

PBC Ireland is delighted to join the Patient Advisory Group for PBC with United Liver. This connects PBC Ireland with the broader international liver disease community, and will provide us opportunities to contribute to global initiatives. unitedliver.org

DeLIVERing an update on liver health in Ireland medicalindependent.ie/clinical-news/…

Big step forward for PBC Ireland. Real-world data. Patient voice. Global impact. A first for patient-led research in Ireland. #PBC #RareDisease #Innovation #CPath #PatientVoice c-path.org/pbc-ireland-pa…

Lá Fhéile Pádraig Sona Duit from PBC Ireland, a meitheal*of people living with PBC across Ireland. 🍀 🍀 🍀 🍀 🍀 🍀 🍀 🍀 🍀 🍀 🍀 🍀 🍀 * a traditional Irish word for a community coming together to help one another

The PBC Treatment Balance Model illustrates how optimal care in Primary Biliary Cholangitis requires balancing three domains: biological disease control, symptom burden, and practical treatment considerations.

The PBC Treatment Divergence Model illustrates how patients may diverge from the standard treatment pathway due to the interaction of biological, symptom, and practical factors. #PBC #RareDisease

The Visible-Invisible PBC Model illustrates how the aspects of Primary Biliary Cholangitis that are most visible in clinical care represent only part of the disease experience.

The PBC Treatment Response Model illustrates how treatment for Primary Biliary Cholangitis is started, monitored, and formally assessed to determine whether the disease is under good control.

The PBC Symptom-Activity Discordance Model illustrates an important feature of Primary Biliary Cholangitis: how a patient feels and how active the disease appears biologically do not always match. #PBC #RareDisease #Liver

PBC isn't a fixed stage disease. It moves depending on treatment response and disease activity. The PBC Activity Dial (PBC-AD) shows this continuum from controlled 🟢 to advanced 🔴 Developed by PBC Ireland. #PBC #RareDisease

The PBC Ire. Good Care Framework explains what good medical care for Primary Biliary Cholangitis should look like, from diagnosis through long-term monitoring. It helps patients understand the typical steps in PBC care, including treatment, monitoring, and symptom management.

I’ve just launched a new comprehensive Patient Information section on the PBC Ireland public website at: pbcireland.org/info_pbc.php

The PBC Ireland patient registry: study protocol for a national platform on primary biliary cholangitis doi.org/10.1177/263300…

These graphics were created for PBC Ireland by the PBC Research Foundation to help raise awareness of Primary Biliary Cholangitis (PBC) - a rare autoimmune liver disease. Rare must never mean invisible. #RareDiseaseDay

Rare Disease Day is held on the last day of February to raise awareness for rare diseases. PBC is a rare autoimmune liver disease that affects only a small fraction of the population. At PBC Ireland, we believe rare must never mean invisible. #RareDiseaseDay #RareDiseaseDay2026

📣 Major Announcement for PBC Ireland 📣 Our first academic paper emerging from the PBC Ireland Patient Registry has now been accepted for publication in the peer-reviewed journal Therapeutic Advances in Rare Diseases. This is a first for the PBC community in Ireland.

What an inspiration, Gerry Nesbitt, PBC patient & Founder of PBC Ireland. Since May 25; 👉🏻 150 members 👉🏻national point of contact for PBC 👉🏻PBC Registry 👉🏻Evidence-based advocacy 👉🏻Shaping policy in Ireland 👉🏻Open to collaboration Phenomenal 👏🏻💚 @PBCIreland @IrelandLiver

Using patient feedback from the PBC Ireland Patient Registry, we’ve created a simple Patient Clinic Visit Questionnaire to help patients prepare, structure appointments, and be heard. Available to download from: pbcireland.org/resources.php

Too many people with PBC say clinic visits feel rushed and focused only on blood tests, leaving symptoms like fatigue, itch, and quality of life unheard...