The Fibrolamellar Registry is run by patients with a rare pediatric/ young adult liver cancer called fibrolamellar hepatocellular carcinoma, and their loved ones. It's a place to both share information on this disease and gather it, as we believe pooling our knowledge will bring us better diagnostics, treatments and, one day, a cure. The Registry first launched in October of 2016. Our survey is approved as a scientific study by the WCG Institutional Review Board and we belong to the REDCap Consortium, which is supported by the National Institutes of Health. We have been awarded grants by the Rally Foundation for Childhood Cancer Research, the Richard Lounsbery Foundation and others, and have been part of the National Patient-Centered Clinical Research Network (PCORNET) as members of the Genetic Alliance. We are partners with the Fibrolamellar Tissue Repository at Rockefeller University, which stores fibrolamellar tissue samples, making the Registry data twice as useful. The Registry is a non-profit organization.