UCL Queen Square Institute of Neurology


Von Hippel-Lindau disease

Medline NLM definition: An autosomal dominant disorder associated with various neoplasms including central nervous system (most often cerebellar) and retinal HEMANGIOBLASTOMA, endolymphatic sac tumors, renal cell carcinoma (see CARCINOMA, RENAL CELL), renal and pancreatic cysts, HEMANGIOMA of the spinal cord, and PHEOCHROMOCYTOMA. The most common presenting manifestations are neurologic deficits associated with intracranial hemangioblastomas which may hemorrhage, causing ataxia, INTRACRANIAL HYPERTENSION, and other signs of neurologic dysfunction.

Von Hippel-Lindau disease: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke information (US site)

Von Hippel-Lindau Disease: information from NORD, the National Organization for Rare Disorders (US site)

PubMed Medline search on Von Hippel-Lindau disease

Support Groups

VHL UK/Ireland
This charity provides support and advice for persons and the families and carers of those persons who have von Hippel-Lindau Syndrome (VHL) and similar genetic conditions such as Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) and Birt-Hogg- Dubé Syndrome (BHD).

Von Hippel-Lindau Support Group
This support group offers contact with other affected persons where this is wanted and support by letter and telephone. (US site)

Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.

Healthtalk: nerves and brain
Personal experiences of people living with various neurological conditions.

Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.

NHS Inform: brain, nerves and spinal cord 
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.