PSC Partners Seeking a Cure is a 501(c)3 non-profit foundation that was 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.
Our selective grant program provides researchers with funds to conduct PSC research. The organization is run mostly by volunteers.
The mission of the PSC Partners Seeking a Cure foundation 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.
PSC Partners strives to achieve its mission in multiple ways. We hold an annual three-day conference in various medical centers that focus on PSC care and research. Many exciting ideas and academic partnerships arise out of these community-building annual events.
The PSC Partners hub is its website where PSC patients, caregivers and friends continue to learn about the organization’s programs, activities and newsletters. The PSC Partners Patient Registry Committee works closely with the PSC Partners Board of Directors and Scientific/Medical Advisory Committee (SMAC) to ensure the efficient and responsible governance of the 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 (GRDR) pilot program. This registry is the exclusive property of PSC Partners.
Through the registry, we aim to reach PSC patients scattered throughout the world and gather data to promote and expand research.
Your participation is crucial. Please register today!
Together in the fight…whatever it takes!