• Dr. Gideon Hirschfield, Hepatologist, Toronto General Hospital
• Dr. Josh Korzenik, Gastroenterologist, Brigham and Women's Hospital
• Dr. Jerome Schofferman, Retired Internist and Post-Transplant PSC Patient

• the symptoms that matter most to them,
• the impact the disease has on patients' daily lives,
• the patients' experiences with currently available treatments,
• and what they hope for from future treatments.

• Representation: Rachel Gomel and Mary Vyas represented PSC Partners Canada at the Canadian Liver Meeting in February during which the inaugural CASL PSC Partners Seeking a Cure award for PSC research was presented.

• Year-End Fundraising Success: The PSC Partners Canada community met the year-end fundraising matching grant challenge and will be announcing research funding awards soon. Thank you to our Canadian community for supporting this important work!

• Signage: PSC Partners Canada has been recognized at the Toronto Centre for Liver Disease at Toronto General for research support with a pretty plaque. We hope this may be another way newly diagnosed PSC patients can find out about us!

• PSC Partners Selected for CZI Rare As One Project Grant: The Chan Zuckerberg Initiative (CZI) announced funding to 30 patient-led organizations, including PSC Partners Seeking a Cure, that are working to find treatments and cures for rare diseases. These grants are part of CZI's Rare As One Project aimed at supporting and lifting up the work that patient communities are doing to accelerate research and drive progress in the fight against rare diseases. The funds, which are designated for one particular research initiative, will be distributed over a two-year period.

Have you heard? New federal price restrictions will block many treatments from coming to Canada.

What if we told you that innovative medicines are being developed that may change how we treat life-threatening diseases. New medicines bring hope to patients and may cure cancer, restore eyesight, grow new bones, prevent heart attacks and kidney failure, replace blood cells, and repair and replacing faulty genes. There are multiple clinical trials underway today in the effort to develop new treatments for PSC.

The challenging news is that Canadian patients might not have access to these new medicines. The biggest potential barrier to new drugs coming into Canada are changes proposed by Canada’s Patented Medicine Prices Review Board (PMPRB). These changes include drugs that are breakthrough, lifesaving, life-altering, first ever treatments for rare and common conditions. New federal price restrictions will block many treatments from coming to Canada. Join Canadian patients in the  #FIGHTforourLIVES.  Other countries have found better ways to lower drug prices without denying their patients an opportunity to improve their quality of life. We Can Too!

For the full details about this issue, which is more complex than we can explain in full here, please visit www.fightforourlives.ca and see for yourself why PSC Partners Canada and Crohn's and Colitis Canada, among other patient groups, are supporting CORD and are signing on to this call for action and suggesting you do too.

The Canadian Organization for Rare Disorders (CORD) has launched a bilingual letter-writing campaign to stop the PMPRB from blocking access to new medicines. Visit  www.fightforourlives.ca  and complete the form letter to share your concerns directly with your member of parliament, Prime Minister Justin Trudeau and Health Minister Patty Hajdu.

This is a great use of some extra time you may have! Visit  www.fightforourlives.ca  and complete the form w hich takes less than twenty seconds to read and send!

A quote from CORD:

Momentum is building on this crucial issue. But we are a long way from winning.    We need to get all MPs to understand that the PMPRB changes will hurt all patients as well as hurt the research investments in Canada. We need you to take action.

Help us create a critical mass of MPs on our side by participating in our letter-writing campaign.