Von Hippel-Lindau Clinical Care Center

What is von Hippel-Lindau Syndrome?

Von Hippel-Lindau Syndrome affects about one in 36,000 people worldwide. Patients with VHL syndrome commonly develop cysts in the kidneys, pancreas, and genital tract. Tumors may be either benign or cancerous, and most frequently appear in young adults, but symptoms can occur at any time.

Patients who have a parent with VHL have a 50 percent chance of inheriting the disease. VHL is not curable. It is the most common among genetic kidney cancer syndromes, making close monitoring and regular screening an important part of your overall care.

Leading expertise from a multidisciplinary team

VHL syndrome requires a lifetime of care, including regular screenings for new tumor growth so treatment – most often surgery – can be provided as early as possible.

Our VHL team, led by Dr. Craig Rogers, the top kidney cancer surgeon in the Midwest, includes experts from genetics, urology, nephrology, cancer surgery, radiology, ophthalmology, neurology and audiology, all working together to manage your care.

Dr. Rogers completed his fellowship training at the National Cancer Institute, which helped discover the VHL gene and pathways, and was a national referral center for VHL patients.

At Henry Ford, our VHL patients and their families have access to the most advanced science-based treatments. We are a national leader in minimally invasive robotic surgery techniques and have one of the largest and most experienced cancer surgery teams in the country.

Personalized care and support services

Your diagnosis, treatment plan and medical team is uniquely yours. With your multidisciplinary team, you will receive the answers to all your questions and access the support you need.

Sometimes you need more than medicine. We also offer compassionate support services to help you overcome your diagnosis and we work closely with the VHL Alliance to provide additional resources so you lead a healthy, full life..