FIBROLAMELLAR REGISTRY INC
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Mission Statement
The Fibrolamellar Registry is a non-profit organization focused on finding a cure for a rare liver cancer that affects children, teens and young adults.
About This Cause
The Fibrolamellar Registry is a non-profit organization whose mission is to help find a cure for a rare, deadly liver cancer that affects children, teens and young adults. Run by patients and their families, we aim to educate fellow patients and doctors about this disease via our website, whose key feature is a registry where patients share their disease histories. The registry is partnered with a tissue bank, allowing approved researchers unprecedented access to both data and tissue (when patients grant such access). When you donate, you not only help us get closer to our goal of finding a cure, and improving much-needed diagnostic tests, you also help a wider range of cancers. Why? Fibrolamellar patients have all been found to have the same exact mutation, making this disease a precise model for understanding many other cancers.