vhl alliance

Genetic Research and VHL

VHLA supports and funds research to help improve treatment and ultimately find a cure for VHL. 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.


The gene that is involved in VHL is also involved in other more common cancers, such as kidney cancer and breast cancer. If researchers are able to overcome the gene mutation for VHL, they may be able to do the same for other cancers.

VHLA partnered with the National Organization for Rare Diseases (NORD) to develop the Cancer is in Our Genes International Patient (CGIP) Database to help researchers better understand VHL and other forms of cancer, with the goal of finding better treatments, and ultimately, a cure. Among other information, the registry can answer important questions like the role lifestyle factors play in causing this genetic alteration and the impact of things like exercise, nutrition and stress on managing the disease.

Patients also have the option of contributing tissue or blood samples through collaboration with National Disease Research Interchange (NDRI).