Our Impact on the PSC Patient Community in Canada
PSC Partners Seeking a Cure Canada’s mission is to drive research to identify treatments and a cure for PSC, while providing education and support for those impacted by this rare disease.
As a registered Canadian charity, we achieve these objectives through an all-volunteer team in Canada. We also receive some operational support from our affiliate PSC Partners Seeking a Cure, which is based in the United States.
2025 PSC Partners Canada’s Achievements
RESEARCH
Research: Finding treatments for PSC & PSC Symptoms
In 2025, PSC Partners Canada awarded Dr. Mark Swain US$75,000 towards his study on “Elucidating Fatigue-Associated Alterations of Brain Structure and Function in PSC”. Fatigue is a common symptom of PSC which can significantly diminish a patient’s quality of life. The research will help identify changes in brain structure associated with fatigue and targets for therapy to improve fatigue in PSC patients.
Canadian researchers are increasingly interested in studying PSC. PSC Partners Canada actively encourages Canadian researchers to apply for the PSC research grants available through PSC Partners (both Canada and US organizations). In 2025, 18 out of 38 grant applications in North America were submitted by Canadian researchers.
FUNDING
Funding: Raising funds for PSC research
PSC Partners Canada’s 2025 fundraising campaign raised $31,000. The main fundraising campaign in 2025 included an Online Auction and an airline ticket raffle.
Donations totalling $45,000 were received from the Canadian PSC community. To help reach this target, three families impacted by PSC generously matched donations up to $20,000.
Over 98% of the dollars raised fund PSC research grants in Canada. The remaining balance covers PSC Partners Canada’s minimal operating expenses.
RESOURCES
Resources: Sharing Canadian-specific and PSC-related information
In January 2025, PSC Partners Canada launched a new bilingual website focused on PSC patients across the country. The site provides information for patients, caregivers and their families through the different stages of the PSC journey – initial diagnosis, living with PSC, advancing PSC, and liver transplant.
The new website’s main audience is PSC patients looking for information on managing this rare disease. Web content has been refreshed and expanded to provide more extensive resources. Auto-translation of the website provides timely French content.
Development of the website was fully funded through an external grant.
SUPPORT
Support: Helping individual throughout their PSC journey
PSC Partners Canada hosted three one-day “What the Cell?!” patient events in Toronto, Edmonton, and Vancouver. These in-person events help educate both new and existing PSC patients on the disease as well as provide updates on new research developments and scientific findings. All events were fully funded by an external grant.
Events also provide attendees opportunities to interact with patients and caregivers who are living with PSC. Based on feedback, meeting other people with PSC is a leading factor to attend the events, especially given the rarity of the disease.
Online PSC Partners Zoom Rooms were available throughout 2025 to help PSC patients and caregivers connect and find support.
AWARENESS
Funding: Raising funds for PSC research
As a rare disease, it is essential to build PSC awareness at the patient, health practitioner, and researcher level. Collaboration with researchers helps them understand the PSC patient perspective. Encouraging PSC patient participation in studies and registries, provides researchers with more extensive information.
PSC Partners Canada representatives actively participated in nine national and international conferences attended by liver specialists. Conference participation was funded by external grants. PSC Partners Canada also contributed to dozens of research studies in 2025 to ensure the patient perspective is central to PSC research.
In 2025, participation in the WIND-PSC study increased to 130 Canadians with PSC, out of almost 500 worldwide. Launched in 2024, the WIND-PSC study gathers clinical, biomarker, and patient-reported data about the progression of PSC and its associated symptoms. Data from the WIND-PSC study will be accessible to all PSC researchers.
The PSC Partner Patient Registry added 32 Canadians in 2025, bringing the total to 287 out of 2,776 participants. The Registry holds PSC patient-reported health information. The de-identified patient database is accessible to all PSC researchers.
In addition to the website, PSC Partners Canada continues to share information on Facebook, Instagram and The Loon Duct, a quarterly newsletter.
