PSC Partners Seeking a Cure Canada is a national registered charity and public foundation focused on primary sclerosing cholangitis (PSC), a rare and progressive liver disease. Created in 2015 as the Canadian affiliate of the US-based PSC Partners Seeking a Cure, the organization mobilizes donors, patients, caregivers and researchers across Canada to accelerate the development of effective treatments and ultimately a cure.
Role of PSC Partners Canada in the funding ecosystem
A core part of PSC Partners Canada’s mission is to raise funds and allocate them to PSC research. Through its Annual Research Grant Program, the organization supports basic, translational and clinical projects that address important and novel questions related to PSC. Since 2016, over C$2.4 million from Canadian-source donations has been directed to PSC research, and since the inception of the binational grants program more than US$5 million has been allocated together with the US partner.
Grants are awarded through a competitive peer‑review process. Letters of intent and full applications follow a defined annual cycle, with proposals evaluated by the Scientific/Medical Advisory Committee (SMAC) and the PSC Partners Canada Board of Directors. Awards include standard seed grants, multi‑year project funding, and specialized recognitions such as the CASL PSC Partners Seeking a Cure Canada Award for the best PSC abstract at the Canadian Liver Meeting, as well as support for trainees working on PSC and autoimmune liver disease.
Supported audiences and research themes
PSC Partners Canada funds researchers at Canadian hospitals and universities and, subject to Canadian charity law, at prescribed universities outside Canada. Supported projects span a wide range of topics, including disease mechanisms, imaging and biomarkers, fatigue and quality of life, pre‑clinical drug development, organoid and animal models, machine‑learning approaches to transplant allocation, and PSC‑associated cancers such as cholangiocarcinoma.
Beyond direct grants, the organization strengthens the research ecosystem by operating and promoting the PSC Partners Patient Registry, a secure international database of more than 2,500 people living with PSC. Approved researchers can request access to de‑identified registry data, which helps design and power studies, understand disease burden, and identify participants for clinical trials.
Patient support, education and clinical trials
While research funding is central, PSC Partners Canada also provides extensive non‑financial support. It offers educational resources tailored to different stages of the PSC journey (initial diagnosis, living with PSC, advanced disease, transplant, and caregiving), organizes conferences and patient events, and facilitates peer‑to‑peer Zoom rooms and mentor matches. The organization collaborates with investigators and industry sponsors on PSC‑related clinical trials by providing patient input on protocols and helping with study awareness and recruitment, particularly within Canada.
History, governance and impact
Founded by parents of paediatric PSC patients, PSC Partners Canada has remained strongly patient‑driven. A volunteer Board of Directors, including individuals with lived experience of PSC and caregivers, oversees strategy, grant decisions and fundraising. Impact metrics shared on the site highlight thousands of participants in the patient registry, millions of dollars raised for research, and a growing portfolio of funded projects in Canada and abroad.
PSC Partners Seeking a Cure Canada thus acts as a specialized disease‑focused funder, combining competitive research grants, data infrastructure, clinical‑trial collaboration and community support to improve outcomes for people living with PSC.