Global Genes Rare Disease Conference

We were excited to attend our first ever Global Genes Rare Disease Conference in Irvine, California September 14-15, 2017. Joining together with many rare disease patient groups, researchers, clinicians and scientists – all working on discovering cures – we were able to share stories and learn strategies to tackle the many challenges facing those with rare diseases.

PBC Awareness Day

On Tuesday, September 12, 2017 a delegation from the Canadian PBC Society met with elected MPPs and Ministry of Health staff at Queen’s Park Legislature in Toronto in our first PBC Awareness Day. Meeting in small groups, MPP’s asked lots of questions and PBC members related personal stories and concerns. With a full day of meetings and a lovely lunch in the legislative dining room we are hopeful that our voices have been heard and are needs will be addressed. We plan to be back next year! See more photos in our photo gallery.

A Very Positive Cross Border PBC Lunch!

On September 6, 2017 in honour of International PBC Day, a group from the USA and Canada met over lunch in Niagara Falls, NY. This was our 2nd annual cross-border lunch. Next year our lunch will be back on the Canadian side of the Falls. We hope you will plan to join us as we share stories and get to know each other. It is always good to talk to people about our rare disease to see what we have in common and understand our differences.


It is with great sadness that we announce the passing of Erica Nirenberg.  Many of you will remember Erica for her kindness and diligence in arranging the room for monthly support group meetings. “She knitted and crocheted for many charitable organizations and kept Dr. Heathcote’s feet warm for many years with handmade slippers!. A truly sweet, generous woman.”

A Day at the Races – Toronto

On June 4, The Canadian PBC Society had a tremendous day at our annual fundraising event ‘A Day at the Races’. We had a great turn out as our members and their friends and families joined us to celebrate and discuss all the accomplishments in the PBC community this year. We ate great food, watched amazing races, enjoyed a wonderful silent auction, and all in good company. We would like to thank all of our donors and sponsors, with whom without this event would not be made possible. The Canadian PBC society is grateful for all our supporters and look forward to ‘A Day at the Races’ next year!