Victoria Government Meeting

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.

Fredericton Government Meeting

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.

Cross Canada making our voices heard – PBC Advocacy

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. 

New Canadian PBC Patient Registry

In 2016, we designated the proceeds of the Canadian PBC Society’s signature fundraising event, A Day at the Races, to support PBC education, awareness and research at the Toronto Centre for Liver Disease.

 

More than $11,000 was raised through the event and these funds have now been committed to a special project that will help enhance and leverage the national PBC patient registry that is being established through CaNAL (Canadian Network for Autoimmune Liver Disease).

 

The CaNAL registry will make it possible to track and follow-up patient medical history and all relevant clinical events over the long term – and on a national scale. The registry will include both existing and newly-diagnosed patients.

 

We’re encouraged to see that this national research initiative is intended to achieve the following results for patients who are living with PBC:

 


  • Early and accurate diagnosis of disease; 


  • Personalized investigations, treatments and monitoring to help to prevent disease progression and the need for liver transplantation;

  • Accurate assessment of a patient’s risk for developing liver-related complications;
  • Identification of potential new therapies; and 

  • Improved quality of life and long-term health for PBC patients

     

    Through our support, we are helping to build awareness of the registry among patients at CaNAL sites. This will include opportunities for patients like you to participate in current and future studies, and will help to bring new CaNAL sites into the network.