Category: PBC Blog

On May 31st the Canadian PBC Society met with the Government officials in Victoria, BC.   In our efforts for us to shine a spotlight on PBC – we told government officials about PBC – the disease itself – and also the challenges of diagnosis and limited treatments available.  We were able to have an excellent discussion about what it’s like to live with PBC.  Our trip was a great success in the journey to raising awareness and spreading information about this rare disease.

The Canadian PBC Society attended a meeting with the a Assistant Deputy of Health for New Brunswick in Fredericton on May 10th. It is exciting to be able to spread information and awareness about PBC across Canada. Follow our journey as we travel throughout the country to provide support, medical information, community, and awareness for those suffering from PBC.

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. 

This is the third 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 to get our stories told, leading to early diagnosis and treatment. Read more

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.

On Sunday, May 14, 2017 the Canadian PBC Society held a PBC Self Management Workshop in Toronto for 16 participants, facilitated by Anne Hartford, MSW, was a great success. See some of our photos now.

On May 9, 2017, Dr Magnus MacLeod, Assistant Professor at Dalhousie University, talked to a group of 30 PBC patients and their guests about the latest in PBC Diagnosis, Treatment and Research. See more photos

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

Members of the Canadian PBC Society were interviewed by Post Media for a series of articles about living with PBC. This is the second 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 the full story.

On International Women’s Day – March 8, 2017 a group of 60 people met in Toronto to hear about the latest in PBC Diagnosis, Treatment and Research. Thank you to presenters: Dr. Aliya Gulamhusein, Toronto Centre for Liver Disease and Dr. Bettina Hansen, University of Toronto! See more photos