Comprehensive Clinical Care Center for von Hippel Lindau Disease

Patients with rare diseases have a need for specialized multidisciplinary care centers. For that reason the von Hippel Lindau Family Alliance designates Comprehensive Clinical Care Center (CCCC) for von Hippel Lindau. The University of Michigan provides care through its VHL Comprehensive Clinical Care Center lead by Tobias Else, M.D. embedded in the Endocrine Oncology Clinic and Cancer Genetics Clinic. We are determined to follow our patients through all associated diseases and screening and work with the Comprehensive Clinical Care Center-affiliated physicians in ophthalmology, neurosurgery, urology, audiology, endocrine and pancreatic surgery and endocrinology. For our VHL patients a network of determined physicians familiar with VHL is available.

What is von Hippel-Lindau disease?

von Hippel Lindau disease (VHL) is a hereditary genetic condition and patients carry a mutation in the VHL gene, which predisposes them to develop several different tumors. Patients with VHL are at a higher risk to develop central nervous and retinal hemangioblastomas, pheochromocytomas, renal cell cancers, pancreatic neuroendocrine tumors and tumors of the inner ear.

As these tumors develop over the life time of a patient, anybody carrying the diagnosis of VHL or having a mutation in the VHL gene will need life-long surveillance to diagnose these tumors early, so they can be easily treated (e.g surgery). The VHL family alliance (please link out) has put forward very detailed information on VHL and recommended screening.

How does the Cancer Genetics Clinic / VHL Comprehensive Clinical Care Center takes care for their patients?

Because so many different organs are involved in VHL, a multidisciplinary team within a CCCC is necessary to best take care of VHL patients. Family diagnosis, surveillance and follow-up visits are offered through the Cancer Genetics Clinc at the University of Michigan. This clinic is also specialized in the care and surveillance of families with other related conditions predisposing to pheochromocytomas and paragangliomas (Multiple Endocrine Neoplasia Type2, Neurofibromatosis Type 1 and Hereditary Paraganglioma syndrome), renal cell cancers (Hereditary Leiomyomatosis and Renal Cell Cancer, Birt-Hogg-Dube etc.) and neuroendocrine tumors (Multiple Endocrine Neoplasia Type 1).

The Cancer Genetics Clinc is the core coordinator of care for these conditions and closely works with patients, patient families and other specialized providers to conduct individualized care for our patients with rare endocrine tumor syndromes. The goal of our clinic is to keep our patients with inherited diseases healthy (prevention), provide the right procedures to detect tumors early (screening) and in case of tumor findings get them referred into the hands of a specialist familiar with these rare conditions (treatment).

For more information or to make an appointment:

Please visit the Cancer Genetics Clinic web pages or email Dr. Else at: [email protected].