vhl alliance

Progress Towards a Cure

The VHL gene regulates multiple pathways that are involved in tumor growth and development. Every day, researchers are learning more about the gene and the disease, leading to a better quality of life for people living with VHL, and ultimately, contributing to finding a cure.


Researchers are finding that the VHL gene controls the expression of other genes that control inflammation in the body, which may be a contributing factor to tumor growth in all cancers. In addition, research suggests there may also be secondary genes related to VHL, which may be different in each organ type.

Advances in the clinical world are also major contributors to longer life. Sequencing the VHL gene, genetic testing, improved diagnostics and treatment, limiting the removal of whole organs, and preserving healthy and active tissue are some of the changes contributing to longer life expectancy. A recent study published in the Journal of Medical Genetics has documented good news for people living with VHL. The average life expectancy of someone with VHL has gone up nearly 17 years!

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