News

Sep 13th, 2026   PBC Ireland Marks International PBC Awareness Day

On International PBC Awareness Day, PBC Ireland joins the global PBC community in calling for greater awareness, earlier diagnosis, better care and equitable access to emerging treatments. We also recognise the patients, families, clinicians, researchers and advocates working together to improve life with PBC.

Sep 12th, 2026   PBC Ireland Community Reaches 160 Members

PBC Ireland’s growing community now brings together approximately 160 people across Ireland. This milestone demonstrates the importance of creating a dedicated national network through which people affected by PBC can find support, reliable information and opportunities to participate in patient-led research.

Aug 20th, 2026   PBC Ireland Patient Registry Reaches 72 Participants

The PBC Ireland Patient Registry has now enrolled 72 people living with PBC across Ireland. This growing patient-led registry is helping to build a clearer picture of the symptoms, treatment experiences, monitoring and unmet needs of Ireland’s PBC community.

Aug 3rd, 2026   PBC Ireland Research Accepted for The Liver Meeting 2026

Research from the PBC Ireland Patient Registry has been accepted for poster presentation at The Liver Meeting 2026, organised by the American Association for the Study of Liver Diseases. The poster will bring the experiences of people living with PBC in Ireland to one of the world’s most important international liver conferences.

May 8th, 2026   PBC Ireland Celebrates Its First Anniversary

PBC Ireland is celebrating its first anniversary, marking a remarkable year of patient support, advocacy, education and research. Since its establishment on 8 May 2025, the organisation has developed a national patient community, launched Ireland’s first patient-led PBC registry and established links with leading Irish and international liver organisations.

Mar 8th, 2026   PBC Ireland Invited to Contribute to the Elafibranor HSA Assessment

PBC Ireland was invited to provide the patient perspective as part of Ireland’s health technology assessment of elafibranor, a potential second-line treatment for PBC. This provides an important opportunity to explain the unmet needs of Irish patients who do not respond adequately to existing treatment.

Mar 7th, 2026   PBC Ireland joins the Patient Advisory Group for PBC with United Liver

PBC Ireland is delighted to join the Patient Advisory Group for Primary Biliary Cholangitis with United Liver. United Liver is a newly established global, patient-led organization focused on advancing liver disease awareness, research, and advocacy. This connects PBC Ireland with the broader international liver disease community, and will provide us opportunities to contribute to global initiatives to improve research, care, and patient outcomes.
Link: www.UnitedLiver.org

Mar 1st, 2026   PBC Ireland Partners with C-PATH

PBC Ireland has partnered with C-Path (Critical Path Institute) to integrate the Irish PBC patient registry into the Rare Disease Cures Accelerator - Data and Analytics Platform (RDCA-DAP), a global research infrastructure designed to accelerate rare disease research. This collaboration brings real-world patient data from Ireland into an international, collaborative environment, helping to ensure that the lived experiences of people with Primary Biliary Cholangitis inform future research, improve understanding of the disease, and support the development of better treatments. It represents an important step forward in patient-led rare disease research in Ireland, placing patient voice and data at the centre of innovation.
Link to full press release

Mar 7th, 2026   PBC Good Care Guide Launched

PBC Ireland has launched the PBC Good Care Guide, a practical roadmap outlining what good medical care for Primary Biliary Cholangitis (PBC) should look like for most patients. The guide describes the key stages of PBC care, from diagnosis and treatment to long-term monitoring and symptom management. It aims to help patients better understand how PBC should be managed and to support more informed conversations with healthcare professionals. By setting out the typical pathway of care, the guide helps ensure that people living with PBC in Ireland understand what good care should involve.

Feb 4th, 2026   PBC Ireland "Protocol Paper" accepted in Journal TAIRD

Major news...Our paper titled "The PBC Ireland Patient Registry: Study Protocol for a National Platform on Primary Biliary Cholangitis" has been accepted for publication in the journal Therapeutic Advances in Rare Diseases.

Feb 1st, 2026   PBC Ireland enters agreement with C-PATH

PBC Ireland has joined forces with the Critical Path Institute (C-PATH) on a mission to help advance primary biliary cholangitis research.

Jan 17th, 2026   PBC Ireland to present at the the Irish Liver Foundation Study Day

PBC Ireland will present at the Irish Liver Foundation Study Day in the Royal College of Surgeons (Ireland), sharing patient-led insights from the PBC Ireland Patient Registry and highlighting priorities for improving PBC care in Ireland.

Jan 15th, 2026   PBC Ireland Launches their Patient Clinic Visit Questionnaire

PBC Ireland has launched its Patient Clinic Visit Questionnaire to help people with PBC prepare for and get more from their consultant appointments. Developed directly from patient feedback in the PBC Ireland Patient Registry, it reflects the issues patients say matter most during clinic visits. The questionnaire is designed to support more balanced, informed, and meaningful consultations.

July 27th, 2025   PBC Ireland Patient Registry is now LIVE!

The PBC Patient Registry is now live, marking a powerful step forward for our community. For the first time in Ireland, people living with Primary Biliary Cholangitis (PBC) are leading their own research journey, shaping the future of care and treatment. This isn’t just a registry - it's a voice for every PBC patient, a tool to make us visible, and a way to ensure our experiences drive real change.

July 26th, 2025   PBC Ireland will attend Global Liver Institute's A3 Program

PBC Ireland will be attending the Global Liver Institute's Advanced Advocacy Academy (A3) in Washington DC this September! From September 5th–8th, we'll be joining liver health advocates from around the world for four days of intensive training, networking and collaboration. This opportunity will equip PBC Ireland with the tools, skills and global connections needed to advocate more effectively for people affected by Primary Biliary Cholangitis (PBC) here in Ireland, and to push for better awareness, research, and care across all liver diseases. PBC Ireland is very grateful to the Global Liver Institute for this incredible opportunity. https://globalliver.org

July 21st, 2025   PBC Ireland Receives IRB Approval to Proceed with Patient Registry

We're delighted to share that PBC Ireland has received full ethics approval from the Institutional Review Board (IRB) for our new patient registry. This marks a major milestone in our efforts to gather real-world data, support research and improve the lives of people living with PBC in Ireland. Thank you to everyone who has supported us. More to come!

June 17th, 2025   The PBC Ireland Patient Registry has been built!

PBC Ireland completed building their patient registry, a vital step in enhancing support for individuals living with Primary Biliary Cholangitis across Ireland. This registry will serve as a secure and confidential database, designed to collect important health information directly from patients. By doing so, it will improve our understanding of PBC, track patient outcomes, and foster collaborative research efforts.

The PBC Ireland Patient Registry will play a key role by capturing real-world data about patients' experiences, treatment responses, and quality of life. This patient-generated insight ensures decision-makers have a comprehensive view of how new treatments impact those living with PBC. By amplifying the patient voice, the registry promotes more informed, patient-centered healthcare decisions and supports equitable access to effective therapies.

The registry is fully GDPR compliant, ensuring the highest standards of data privacy and security.

May 8th, 2025   PBC Ireland Launched!

PBC Ireland aims to connect patients across the country, share relevant news and treatment updates, and provide support that reflects the realities of living with PBC in the Irish healthcare system. With healthcare systems varying widely from country to country, having a group tailored to Ireland helps fill a critical gap in localized support and advocacy.