VHL or von Hippel-Lindau is a genetic form of cancer. VHL patients battle a series of tumours throughout their lives. The VHL gene is involved in many other forms of cancer.
Key facts:
- Sites at risk include: kidney, retina, spinal cord, brain, pancreas, adrenal gland and inner ear
- Studies of VHL gene have resulted in approval of multiple cancer drugs
- Particularly in the case of kidney and pancreas, if not treated correctly, tumours can metastasise
- There is no cure for VHL but we are working every day to improve treatments
- The VHL mutation is a dominant inherited trait: offspring have a 50% chance of inheriting the mutated VHL gene
- 20% of people with VHL are the first person in their families with this disease (this is called “de novo”)
- VHL affects people of all ethnicities around the globe
- VHL affects people very differently even within the same family
- The prevalence of VHL is approximately 1 in 70,000
- About 120,000 people are affected by VHL worldwide
- The VHL gene controls the major feeding pipeline of every tumour
- Curing VHL brings us one step closer to curing many forms of cancer
