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.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http: //www.orphadata.org. Data version October 2023.
Newly diagnosed with
Von Hippel-Lindau disease?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
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.
Moonshots for Unicorns
Curing single-gene disorders
COMBINEDBrain is a consortium for outcome measures and biomarkers for neurodevelopmental disorders. We are collaborating to cure rare, non-verbal brain disorders.
Adrenal Alternatives Foundation
Advocacy & Access for all cortisol care.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
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
Help Hope Live
Help Hope Live assists individuals living with catastrophic injuries and illnesses to fundraise toward their medical expenses and related costs.
For a list of clinical trials in this disease area, please click here.