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This handbook was written as a guide and a reference book for parents and children of all ages living with von Hippel-Lindau (VHL), a hereditary cancer syndrome that increases one's risk of having tumors of the eye, brain, spinal cord, kidneys, pancreas, and adrenal glands. It was specifically designed for parents to read to their children so they could answer any questions their chil... More

This handbook was written as a guide and a reference book for parents and children of all ages living with von Hippel-Lindau (VHL), a hereditary cancer syndrome that increases one's risk of having tumors of the eye, brain, spinal cord, kidneys, pancreas, and adrenal glands. It was specifically designed for parents to read to their children so they could answer any questions their children might have about VHL. It can also be used as a starting point for discussions about how VHL has affected the family. The book will give children a basic idea about VHL and how they can use this information to live and manage their health. It may also be helpful for families dealing with any hereditary cancer syndrome. Written and reviewed by a team of parents and professionals, and illustrated with charming drawings and photographs from children with VHL, their siblings and friends, the book is upbeat and hopeful, helping children understand what is happening, and leaving them with a sense of empowerment.

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