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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.

The PSC Partners Patient Registry Committee: The PSC Partners Patient Registry Committee ensures the efficient and responsible governance of the registry.

Rachel Gomel headshot

Rachel Gomel, MA

Registry Director

PSC Partners

Sharon Nanz headshot

Sharon Nanz, BA

Registry Coordinator

PSC Partners

Chris Bowlus headshot

Chris Bowlus, MD

Registry Scientific Advisor

Chief of Gastroenterology

Univ. of California, Davis

Susan O'Dell headshot

Susan O'Dell, SM, MS

Registry Analyst

PSC Partners

Mary Vyas headshot

Mary Vyas, SM, MA

Registry Strategist

PSC Partners Canada

Brian Thorsen headshot

Brian Thorsen, BA

Registry Analyst/Webmaster

PSC Partners

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 provide education and support to PSC patients, families, and caregivers, and to raise funds to research causes, treatments, and potential cures for primary sclerosing cholangitis. The PSC Partners Patient Registry welcomes worldwide registry participants.

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).

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