Rare Disease Day – Focus on Advocacy

On February 28, 2017, Rare Disease Day, Nancy Stewart and Gail Wright attended a Rare Disease Event at the Ontario Legislature, where we had the opportunity to meet Members of Provincial Parliament and tell them about PBC. A highlight of the day was witnessing MP Michael Harris announce a Rare Disease motion that would help those with rare diseases get access to much needed care and treatment options #TreatRareDisease. We plan to meet with Provincial legislators across Canada beginning this spring.

Rare Disease Day – Focus on Research

Congratulations to the 2017 recipient of our Outstanding PBC Research Award – Dr. Andrew Mason, Co-Director of the Centre for Excellence for Gastrointestinal Inflammation & Immunity Research, University of Alberta. Canadian PBC Society recognizes Dr. Andrew Mason for his contribution and dedication to PBC Research and his ongoing commitment to his PBC patients. A world leader in PBC research and treatment, he has worked tirelessly on behalf of PBC patients. For over a decade, he has focused his research on establishing a link between the human betaretrovirus (HBRV) and PBC.

 

Dr. Mason’s patients said

 

  • “Dr Mason was instrumental in developing treatment for PBC; he has worked extensively with fibroscan, transplant, gene research, patient care and education. His years in England, the US and ultimately in Canada at the University of Alberta have provided a wealth of new information on PBC and it’s treatment”

     

  • “Dr Mason attends our PBC support meetings and provides education about this illness to the general public.”

     

  • “Dr Mason has always treated me with respect and I am so fortunate to have him as my doctor.”

     

  • “Dr. Mason has spent his entire research career searching for the cause and treatment of PBC. His dedication to this disease is unlike no other. He makes his patients priority in his life. As one of his long term patients, for the last 17 years, he has made my battle with this disease so much easier. Even at the time of liver transplant, he was at my bedside everyday to ensure my continued healthy recovery. He is so determined to put an end to PBC that he says that his life’s work will not be done until the cause and cure for this disease has been found. Dr Mason definitely deserves this grant for his commitment to PBC.”

     

    Join us in congratulating Dr. Andrew Mason!

Rare Disease Day- Focus on PBC Awareness

Members of the Canadian PBC Society were interviewed by Post Media for a series of articles about living with PBC. This is the first of four PBC profiles that will appear in the National Post Patient Diaries Series. One of the best ways to raise awareness about PBC is get our stories told, so that people can understand the disease and its impact on our lives. Read full article now.

In Memoriam

It is with great sadness that we announce the passing of Betty Van Luven. Betty was active in the Canadian PBC Society since 2012, and served on the executive 2015-2016. She was a gifted speaker, an enthusiastic supporter and good friend. We will miss her dearly.