About Us
The PSC Partners Patient Registry: The Registry was created with the guidance of the NIH Office of Rare Disease Research (ORDR). In 2012, PSC Partners was one of the rare disease organizations selected by the ORDR to participate in their Global Rare Disease (Patient) Registry and Data Repository pilot program. This registry is the exclusive property of PSC Partners.
​
Mission: The Registry's mission is to facilitate, expedite, and advance patient-centered research towards treatments and a cure for PSC, by educating, supporting, and engaging all PSC patients to participate in patient-reported and clinical research.
​
The Registry aims to represent the global community, across all stages of disease, including all ages, post-transplant, and deceased; and to reach underserved communities.
​
The PSC Partners Patient Registry Committee: The PSC Partners Patient Registry Committee ensures the efficient and responsible governance of the registry.
Rachel Gomel, MA
Sharon Nanz, BA
Brian Thorsen, BA
Chris Bowlus, MD
Registry Scientific Advisor
Chief of Gastroenterology
Univ. of California, Davis
Susan O'Dell, SM, MS
PSC Partners Seeking a Cure: PSC Partners Seeking a Cure is a US-based 501(c)3 nonprofit foundation created in 2005. The mission of PSC Partners 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.
​
Please visit the PSC Partners website at www.pscpartners.org for more information about the organization, including research grants, patient conferences, and the PSC Partners online resources (education, newsletters, social media locations).