Survival and causes of death in patients with von Hippel-Lindau disease

von Hippel-Lindau disease (vHL) is a hereditary tumor predisposition causing life-long risk of tumor development in multiple organs. In a national research project including all known vHL families in Denmark, we found that the survival of vHL patients has improved over the last 100 years, and is getting closer to that of their siblings without vHL and the general population. Survival is influenced by a patient’s birth year, sex, and type of mutation in the VHL gene. The estimated mean life expectancy of vHL patients born in 2000 was 67 years for men and 60 years for women. (By Dr. Marie Louise Binderup, )

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