Explore the Familial Renal Cell Carcinoma & VHL Disease Clinic

The Familial Renal Cell Carcinoma and von Hippel-Lindau Disease Clinic is an integral part of the Center for Cancer Risk Assessment (CCRA). It is led by Othon Iliopoulos, MD, a medical oncologist and researcher focused on the biological basis of renal (kidney) cancer and other types of tumors.

New patients meet with Dr. Iliopoulos and a genetic counselor for evaluation of kidney cancer susceptibility and medical care. If necessary, blood is drawn for genetic testing. This information helps guide patients and their family members regarding their future cancer risk.

If you are identified as high-risk based on genetic testing and/or family history, you can choose to be followed by Dr. Iliopoulos and the high-risk team at the Massachusetts General Hospital Cancer Center.

Should You Consider Genetic Counseling?

A visit to our clinic may be appropriate if you have a personal or family history of one or more of the following:

  • Renal cell carcinoma (RCC): Cancer of the kidney
  • Hemangioblastoma: A specific type of benign (non-cancerous) tumor seen in the brain, spine or retina
  • Pheochromocytoma: A neuroendocrine tumor of the adrenal gland
  • Paraganglioma: A neuroendocrine tumor of the peripheral nervous system in the head, neck, chest or abdomen
  • Multiple fibrofolliculomas, trichodiscomas or cutaneous leiomyomas: Types of benign (non-cancerous) skin lesions
  • Pancreatic neuroendocrine tumor: A neuroendocrine tumor of the pancreas

Hereditary Kidney Cancer Syndromes

The syndromes most commonly discussed with patients in our clinic are listed below, along with common features often seen in these conditions.

  • Von Hippel-Lindau disease (VHL)
  • Birt-Hogg-Dube syndrome (BHD): Fibrofolliculoma/trichodiscoma, kidney cancer, spontaneous pneumothorax (collapsed lung)
  • Hereditary Leiomyomatosis and Papillary RCC (HLRCC): Leiomyoma on the skin, multiple uterine fibroids, papillary kidney cancer
  • Hereditary Papillary RCC (HPRCC): Papillary kidney cancer
  • Hereditary Pheochromocytoma/Paraganglioma

In addition to genetic risk assessment, we also specialize in providing comprehensive medical management for the above hereditary syndromes. We are recognized as a VHL Clinical Care Center by the VHL Alliance.

Free Webinar for Patients - March 3rd

Please join us on March 3rd, 2021 for a free virtual conference for patients and families to learn from experts in the field. You will hear about the most recent updates on the treatment and management of individuals at risk for kidney cancer including the latest research. We will also discuss living with and coping with the risk of kidney cancer.

Learn more and register here.

Patient Education and Resources

Genetic Testing FAQs

Genetic Testing FAQs

Answers to genetic testing FAQs, by our team of certified genetic counselors.

Kidney Cancer Treatment Program

Kidney Cancer Treatment Program

Learn about the Cancer Center's Kidney Cancer Treatment Program.

VHLA (von Hippel-Lindau Alliance)

VHLA (von Hippel-Lindau Alliance)

The VHL Alliance provides information for families and physicians about this disorder.