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New Canadian PBC Patient Registry

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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:

 

  • Early and accurate diagnosis of disease; 

  • Personalized investigations, treatments and monitoring to help to prevent disease progression and the need for liver transplantation;

  • Accurate assessment of a patient’s risk for developing liver-related complications;
  • Identification of potential new therapies; and 

  • Improved quality of life and long-term health for PBC patients

     

    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. 


    • PBC Prevalence Study released

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    See the first Canadian PBC Prevalence study published March, 2017. The objectives of this study were to estimate and characterize the PBC population and associated PBC liver transplant recipients across Canada.

     

    The study:
  • Estimates the prevalence of PBC
  • Describes the PBC patient population
  • Estimates the prevalence of PBC liver transplants
  • Describes the PBC liver transplant population

     

    Read full study

    • In Memoriam

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    It is with great sadness that we announce the passing of Maureen Hill. Many of you will remember Maureen as an active member of our Edmonton group. We will miss Maureen’s warm and caring nature.

    Regional Coordinator News

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    April 28-30, 2017 we held our first Regional Coordinators Meeting in Toronto. It was great to see representatives from across the country gather together to discuss how to better support our growing membership. We discussed how we can better: communicate news; support newly diagnosed; use technology; create awareness among medical community and many more important topics.

     

    We’re very pleased to announce that Shauna Vander Well has agreed to act as the Canadian PBC Society Regional Coordinator for all of Alberta. Shauna has been the coordinator for Alberta North for longer than many of us have been involved! She has done an excellent job, providing personal support to PBC patients in the northern part of the province and keeping patients and their families connected through many different educational and information-sharing programs. She has also built many important relationships with the clinical community, including with Dr. Andy Mason.

     

    Many PBC patients in what we have historically called “Alberta South” have travelled to the Edmonton area to attend some of the patient meetings and workshops that Shauna has organized. By expanding her role, Shauna will now offer the same personal support, information-sharing and education events to all PBC patients and their families in Alberta. She has our personal thanks for taking on this important and expanded role.

     

    If you wish to contact her, she can still be reached at AlbertaN@societe-cbp.ca