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About VHL Disease

VHL disease is a hereditary condition characterized by tumors that can occur in one or more areas of the body. These tumors can be benign (noncancerous) or malignant (cancerous). However, even benign VHL-associated tumors can cause medical problems.

Not every individual with VHL has the same presentation, and it can be difficult to predict how someone may be affected. Tumors may include:

  • Central nervous system (cerebellar, brainstem and spinal) hemangioblastomas
  • Retinal hemangioblastomas
  • Endolymphatic sac tumors
  • Epididymal cysts
  • Pancreatic neuroendocrine tumors and cysts
  • Pheochromocytomas and paragangliomas
  • Renal cell carcinoma

Expert Diagnosis, Screening and Treatment

Patients with VHL, as well as people with known family history of VHL, can benefit from care provided by a team that has recognized experience with this complex condition. Early detection, active surveillance and appropriate treatment can greatly reduce the most serious consequences of VHL.

The VHL Clinic at Northwestern Memorial Hospital includes a multidisciplinary team of experienced specialists who work together to keep patients healthy by detecting tumors early. If a tumor is detected, expert treatment is available through the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. In addition, genetic counselors with in-depth knowledge of VHL are available to provide advice and support.

To learn more or to make an appointment, email vhl@nm.org or call 312.926.0409, TTY 711.

Meet the Team

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Because VHL disease can impact so many parts of the body, the VHL Clinic at Northwestern Memorial Hospital brings together a comprehensive team of specialists to develop individualized care plans based on patient needs.

Meet the Von Hippel-Lindau Clinic Team

Areas of Care

Endocrinology and Endocrine Surgery

Northwestern Medicine Endocrinology provides comprehensive diagnosis and treatment of diseases of the pituitary, thyroid, parathyroid and adrenal glands.

Genetics and Genetic Counseling

Specially trained genetic counselors at Northwestern Medicine provide comprehensive genetic counseling and testing services.

Maternal-Fetal Medicine and High-Risk Obstetrics

Board-certified obstetricians trained in diagnosing, treating and managing high-risk pregnancies provide specialty care for underlying medical conditions that could complicate a pregnancy, from pre-conception through delivery.

Nephrology

The Northwestern Medicine Nephrology and Hypertension Program provides diagnosis and treatment for disorders and diseases of the kidneys.

Neuro-Oncology and Neurosurgery

The Lou and Jean Malnati Brain Tumor Institute of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University specializes in the treatment of brain and spine tumors, including rare cancers, and performs more brain and spine tumor surgeries than any other health system in Illinois.

Oncology

Through the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, patients with VHL have access to state-of-the art therapies and comprehensive cancer care, including leading-edge medical, surgical and radiation oncology treatment options, as well as access to specialized research, clinical trials and diagnostic services.

Ophthalmology

Ophthalmology experts at Northwestern Medicine manage the full spectrum of eye disease, providing world-class eye care.

Pancreatic and Gastrointestinal Cancers

The Lurie Cancer Center at Northwestern Medicine offers comprehensive, compassionate care for patients with pancreatic and gastrointestinal cancers, offering state-of-the-art treatment options and advanced surgical techniques.

Palliative Care

Northwestern Medicine palliative care specialists address the wide array of symptoms and side effects that can result from serious conditions and their treatment.

Psychiatry and Psychology

The Behavioral Health Services team at Northwestern Medicine includes board-certified psychiatrists and psychologists dedicated to providing compassionate care through treatment plans that are personalized for each patient.

Social Work

Experienced social workers connect patients and families with resources they need to meet the complex psychosocial challenges that often accompany a diagnosis.

Urologic Oncology

Our urologic oncologists at the Polsky Urologic Cancer Institute of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University offer advanced surgical techniques in addition to multidisciplinary treatment with medical and radiation oncologists.

Genetic Testing for VHL

VHL disease is caused by pathogenic variants (disease-causing changes) in the VHL gene. If you have a pathogenic variant in the VHL gene, you are at increased risk of developing certain tumors. VHL Clinic genetic counselors can provide support and help patients navigate the complex nature of VHL and its in-depth surveillance recommendations.

The genetic counselors could provide a comprehensive risk assessment and help individuals determine whether genetic testing is right for them.

Screening and Surveillance

Specialists at the VHL Clinic at Northwestern Memorial Hospital use the latest diagnostic tools to screen and identify the various tumors associated with VHL.

Treatments

Leveraging the resources and expertise of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, specialists in the VHL Clinic at Northwestern Memorial Hospital offer the latest treatment options for VHL-related tumors.

Why Choose Northwestern Medicine

When options are limited, our experienced team is often able to offer innovative therapies and novel treatments through a wide variety of clinical trials at a National Cancer Institute-designated Comprehensive Cancer Center, recognized for its scientific leadership and clinical care.

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Northwestern Memorial Hospital is recognized by the VHL Alliance as a Clinical Care Center (CCC).

Neurological Management of Von Hippel-Lindau Disease

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In this episode of our Better Edge podcast, Rimas Lukas, MD discusses the pathophysiology of Von Hippel-Lindau disease (VHL) and its nervous system manifestations. He walks us through the clinical diagnostic criteria, the therapeutic management of CNS hemangioblastomas and endolymphatic sac tumors and how recent advances have increased our understandings of pathologies of VHL.