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.”
On November 2, 2017, the Canadian PBC Society hosted a dinner meeting to discuss the latest in PBC news. Dr. Mark Swain from the University of Calgary presented PBC patients and their guests an informative and interesting talk about PBC followed by a question and answer session Check our website Calendar of Events for future dates and locations. To see more photos click here
On October 25, 2017, the Canadian PBC Society hosted a dinner meeting to discuss the latest in PBC news. Dr. Thomas Shaw Stiffel, Dr. Erin Kelly and Dr. Cynthia Tsien from the Ottawa Hospital were our special guest speakers. Attendees came from from both Ontario and Quebec and we had our first meeting in both French and English. For some participants, if was their first opportunity to meet others with PBC. We had a lively question and answer session and everyone agreed that it would be wonderful to meet again at upcoming PBC workshops. Check our website Calendar of Events for future dates and locations. To see more photos click here.
The Canadian PBC Society traveled to Washington, DC to attend The Liver Meeting. While there, we had the privilege of hearing from world leaders in PBC research such as Dr. Robert Gish, Dr David Bernstein, Dr. Gideon Hirschfield, Dr. Chris Bowlus, Dr. John Vierling and many more. It was amazing to learn about the many new drugs in development for PBC – check our Research blog to learn about all of the new drugs currently in clinical trials. We met up with PBCers Carol and Cathy at their booth where they displayed their new brochures and information cards. We also spent some time with our friend from the UK PBC Foundation, Robert who shared the foundation’s newest “Living with PBC” booklet and PBC APP. It was great to meet Dr. Sanjaya Satapathy, from the University of Tennessee Health Science Center, whose project focused on PBC education for the medical community and patients. The PSC Partners did an amazing job of creating an info card that explains the difference between PBC and PSC. It was a great honour to join the 2016 award winners of Intercept’s Practice to Policy Awards to present the results our winning Peer to Peer and Coping Skills Workshop Project.
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.
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.
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.
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!