The Fibrolamellar Registry

The Fibrolamellar Registry is an international registry of patients with the rare pediatric/young adult liver cancer fibrolamellar hepatocellular carcinoma. It is run by patients and their loved ones and is 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. Multiple peer-reviewed articles have been published in high-impact science publications based on data we have gathered.