PBC Ireland exists to ensure that Irish people living with Primary Biliary Cholangitis (PBC) have a local voice, helping to shape care, policy and research within Ireland’s healthcare system. #PBCIreland #RareDisease #LiverHealth #PatientVoice

They can capture long-term outcomes, safety data, and patient-reported quality of life in near real-time, providing regulators with robust evidence in while protecting access for patients. This is the approach I will be advocating more strongly for in the future.

Patient registries might be the sweet spot, bridging the gap between clinical trials and real-world treatment...

Few are willing to risk being randomised to placebo when their disease could worsen. So what's the way forward? Rare diseases like PBC need a more flexible approach to clinical trials, one where innovation isn't blocked by impractical clinical trial designs...

🍀 PBC Awareness Day -- Sept 14th, 2025 -- Lá Feasachta PBC 🍀 PBC Ireland is here to support, connect, and advocate for everyone living with Primary Biliary Cholangitis in Ireland. https://t.co/k1xLFc1IR6

PBC Ire. has been busy, welcoming new scientific advisors, first academic paper, patient registry (37 participants), 100+ members, stronger governance, new partnerships in Ireland and Europe, advocacy in Washington,DC...we’re building real momentum for the Irish PBC community.

September is PBC Awareness Month...my voice, your voice, our voice...one community: PBC Ireland.

Today we have reached a very special milestone...100 people affected by PBC are now part of this group. Reaching this number for a rare disease like PBC in a small country like Ireland shows just how important and needed this community is. Thank you.

These developments lay the groundwork for stronger national research and better advocacy for everyone in Ireland living with PBC. #PBC #RareDisease #LiverHealth #PBCIreland

We’ve also launched early collaborations with Irish researchers to begin analysing the registry data, helping turn patient insights into real research outcomes.

We’ve received a grant from the Global Liver Institute to attend their Advanced Advocacy Academy (A3) in Washington, DC this September. A fantastic opportunity to strengthen international partnerships.

PBC Ireland has joined the ERN RARE-LIVER network, a major step in giving Irish patients a stronger voice at the European level and connecting with groups across the EU.

The registry was approved under IRB exemption as an observational study and is securely hosted in Ireland, fully GDPR-compliant to protect patient privacy.

The PBC Patient Registry is now live, with a strong number of patients already enrolled and completing forms. It’s a major step forward for research and advocacy in Ireland.

PBC Ireland has made significant progress recently, marking several key milestones for the PBC community. Here's a quick round-up......

The PBC Ireland Patient Registry is now live!

Exciting news! I've been awarded a scholarship to attend @GlobalLiver's Advanced Advocacy Academy (A3) in Washington DC this Sept 5–8! I'm proud to represent #PBCIreland & advocate for better liver care worldwide. 👉 https://t.co/9YF1QyiEzj #LiverHealth #GLI #A3Academy

PBC Ireland has received full ethics approval from the 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. More to come! #PBC #PatientRegistry #Rare

CRID is the most patient-centric UPI system in research today. It bypasses regulatory complexity by staying out of clinical care and staying inside research domains. It enables ethical reuse of existing patient data and biospecimens and works in all rare disease networks.

We’ve released the Automatic CRID Creation API, making it easier for 3rd party applications to generate Clinical Research IDs (CRIDs) directly from within their systems. This is a big step toward improving data linkage across research studies #CRID #NoMoreDataSilos #RareDiseases