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Latest Research

Understanding and finding a cure for VHL helps us find a cure for cancer since the same gene is involved in many types of cancer.


Advances in the clinical world in the last century have dramatically improved the medical outcomes that VHL patients have. As documented in the Journal of Medical Genetics, the average life expectancy of someone with VHL has increased nearly 17 years; people are now living into their 80’s! Sequencing the VHL gene, improving diagnostics, limiting the removal of whole organs when there is a small tumor, and preserving healthy and active tissue—these are some of the many steps which have helped improve the prognosis for those affected by VHL. The journey toward a cure continues with basic, translational, and clinical research. Click here for a listing of the current clinical trials in progress. This is an age of rapid movement toward treatment.

The vhl gene (3p25) is also involved in other more common cancers, such as kidney cancer and breast cancer. Discovering a cure for VHL may also lead to a cure for these other related cancers, too. More attention is being given to the specific type of mutation in the vhl gene. Research in this area may improve the accuracy with which clinicians can predict the manifestation and growth rate of tumors of a specific individual with VHL. Click here to access the VHL Genetic Mutation Database.

To keep abreast with the most updated manuscripts on treatments and research in the field, please visit the von Hippel-Lindau Disease Spotlight on Elsevier’s PracticeUpdate.

VHL Disease Spotlight