News

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.