PSC Science News

February 2023

Edition 1

Welcome to the first edition of PSC Science News. In this email, PSC Partners will share important science and research updates and information about primary sclerosing cholangitis (PSC) and closely associated diseases, such as inflammatory bowel diseases (IBD) and cholangiocarcinoma (CCA).

PSC Partners Part of CZI Study Advancing Understanding of Rare Diseases

PSC Partners Seeking a Cure is one of five patient-led rare disease groups that, together with collaborative research teams, were selected for support of four-year research projects aimed at advancing understanding of the fundamental biology underlying their rare inflammatory pediatric disease. 

Supported by the Chan Zuckerberg Initiative (CZI), the multi-year primary sclerosing cholangitis (PSC) project will focus on clarifying the cellular mechanisms of pediatric PSC, a rare liver disease, and identifying potential cellular targets for effective therapies. 

PSC Partners believes in the power of the Collaborative Network Model approach to rare disease research. This approach centers the patient voice in a formal structure of multi-stakeholder collaboration. In response to patient requests, PSC Partners launched the International Collaborative Research Network (ICRNetwork) at our Annual Conference in June 2022. The ICRNetwork is best described as a vision for the future of PSC research, with PSC patients at the forefront.

2022 PSC Partners Research Grants Program Update: Four New Projects Receive Funding

PSC Partners is excited to share information about the four scientific teams who were awarded grants in 2022 to drive research to identify treatments and a cure for PSC. These awards, which were announced in late 2022, include three international studies, plus one more in conjunction with our affiliate PSC Partners Canada with research to begin in 2023. This brings our funding total to more than $6 million. Click below to read a summary of each project. We will be accepting applications for our 2023 cycle soon.

View application information here.

CCA Awareness Month: Surveillance of CCA in Patients with PSC

Review of Prospective Surveillance for Cholangiocarcinoma in Unselected Individuals with Primary Sclerosing Cholangitis by PSC Partners Seeking a Cure Volunteer Commentator Mahesh Krishna, a third-year medical student at Johns Hopkins University School of Medicine. The article being reviewed was published in the Journal of Hepatology. Mahesh Krishna was diagnosed with PSC during high school at the age of 15 and is interested in pursuing a research career in PSC-IBD.

About PSC Partners: The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC) while providing education and support for those impacted by this rare disease.

Founded in 2005, PSC Partners Seeking a Cure is a 501(c)(3) nonprofit organization. The various programs give support to patients, caregivers, families, and friends, educate patients and the medical community about primary sclerosing cholangitis (PSC), a rare liver disease, and encourage ground-breaking research in the search for treatments and a cure.

Questions? Contactus@pscpartners.org