Von Hippel-Lindau disease

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Von Hippel-Lindau disease

Synonyms: Familial cerebelloretinal angiomatosis | Lindau disease | VHL | Von Hippel-Lindau syndrome

Von Hippel-Lindau disease (VHL) is a familial cancer predisposition syndrome associated with a variety of malignant and benign neoplasms most frequently retinal cerebellar and spinal hemangioblastoma renal cell carcinoma (RCC) and pheochromocytoma.

Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.

Reference: Access aggregated data from Orphanet at Orphadata.

Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http: //www.orphadata.org. Data version October 2023.

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Von Hippel-Lindau disease?

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Advocacy Organizations

Being Positioned, Inc.

Being Positioned is a nonprofit organization that seeks to empower and improve the lives of adults living with rare genetic disorders. Our mission is to help individuals discover their purpose through traveling, building community, and creating memorable experiences. We grant all-expenses-paid Journeys (trips) to adults 21+, diagnosed with life-altering rare genetic disorders.

My Faulty Gene

My Faulty Gene is a nonprofit organization which provides information and assistance to any individual whose family medical history suggests genetic testing might be helpful in identifying an increased risk of disease due to a genetic mutation. We believe that everyone in need of genetic testing should have access to it.

My Little Sunshine Foundation

My Little Sunshine is a non-profit foundation dedicated to educating people about the importance of fertility preservation and making fertility resources accessible to all.


Educate and provide resources to POC with Rare Cancers

Clinical Trials

For a list of clinical trials in this disease area, please click here.