Primary Biliary Cholangitis (PBC) News and Information
Joined May 2025
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24 Photos and videos
May 8
It's concerning when I see companies mass collecting patient data through so called "surveys" and "patient engagement" with minimal to no governance or ethical oversight, usually with a misleading or deceptive description.
#EthicalPatientResearch #StopPatientDataHarvesting
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Apr 24
You can now donate to PBC Ireland via the Irish Liver Foundation using this link: idonate.ie/fundraiser/pbcire…
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Apr 19
For those living with liver disease, looking after your liver is part of everyday life.
For everyone else, it's something we should think about more.
More of what your liver loves. Less of what stresses it. Stay active.
@WorldLiverDay @EASLnews
#WorldLiverDay
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Apr 19
For those living with liver disease, looking after your liver is part of everyday life.
For everyone else, it's something we should think about more.
More of what your liver loves. Less of what stresses it. Stay active.
@WorldLiverDay @EASLnews
#WorldLiverDay
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Apr 19
For those living with liver disease, looking after your liver is part of everyday life.
For everyone else, it's something we should think about more.
More of what your liver loves. Less of what stresses it. Stay active.
#WorldLiverDay #WorldLiverDay2026
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Mar 27
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/
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Mar 17
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-partn…
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Mar 16
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
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Mar 14
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.
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Mar 14
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
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Mar 11
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.
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Mar 11
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.
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Mar 9
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
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Mar 8
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
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Mar 7
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.
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Mar 1
I’ve just launched a new comprehensive Patient Information section on the PBC Ireland public website at: pbcireland.org/info_pbc.php
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Mar 1
The PBC Ireland patient registry: study protocol for a national platform on primary biliary cholangitis
doi.org/10.1177/263300402614…
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Feb 28
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
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Feb 27
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
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