Starting in Halifax in May, 2017, the Canadian PBC Society met with government health policy experts, decision-makers, medical professionals, and PBC patients and their families to talk about the ongoing work to find a cure for PBC, the critical need for early diagnosis of PBC patients, treatment options and the implications of disease progression for patients and their families.
“GENFIT: First Patient enrolled in a Phase 2 Trial recruiting Adults with Primary Biliary Cholangitis (PBC), a Rare Liver Disease ” – Read More
In 2016, we designated the proceeds of the Canadian PBC Society’s signature fundraising event, A Day at the Races, to support PBC education, awareness and research at the Toronto Centre for Liver Disease.
More than $11,000 was raised through the event and these funds have now been committed to a special project that will help enhance and leverage the national PBC patient registry that is being established through CaNAL (Canadian Network for Autoimmune Liver Disease).
The CaNAL registry will make it possible to track and follow-up patient medical history and all relevant clinical events over the long term – and on a national scale. The registry will include both existing and newly-diagnosed patients.
We’re encouraged to see that this national research initiative is intended to achieve the following results for patients who are living with PBC:
Through our support, we are helping to build awareness of the registry among patients at CaNAL sites. This will include opportunities for patients like you to participate in current and future studies, and will help to bring new CaNAL sites into the network.