Salutations

 En 2001, j’ai reçu le diagnostic de la CBP.  Après le choc de cette nouvelle et le début de la prise d’Ursodiol, j’ai senti le besoin d’en connaitre davantage sur cette maladie et, surtout, d’échanger avec des personnes traversant la même épreuve que moi, briser ma solitude. 

A travers un site européen, j’ai fait la connaissance de Lisette, cette femme superbe qui est devenue une grande amie.  Par le biais de la Société canadienne de la CBP, j’ai rencontré Shirley, un véritable rayon de soleil, Francine A. tellement sympathique et emphatique ainsi que plusieurs autres personnes exceptionnelles, membres de notre groupe, qui compte énormément dans ma vie, qui font partie du beau côté de la maladie.

La Société joue un rôle fort important auprès des personnes atteintes de la CBP, elle nous informe, nous éduque, participe à la recherche et nous rassemble.

Francine Lamontagne
Responsable – Québec

Important Update

Obeticholic acid (Ocaliva) has recently been licenced in Canada for the treatment of people with PBC who have not fully responded to, or who are unable to tolerate, Ursodeoxycholic acid. You may have seen a recent news report from the U.S. regarding some serious adverse outcomes for PBC patients whose prescribed dose of Ocaliva was significantly higher than that recommended and approved by the FDA. This appears to be an issue primarily among patients who have advanced cirrhosis, some of whom have experienced liver injury, liver failure, and even death. We feel it’s important to make sure you are aware of this issue. If you are being treated with Ocaliva and have any questions or concerns about the appropriate dosage level for your stage of PBC, you should talk to your doctor.

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.