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UCL Queen Square Institute of Neurology

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Neurofibromatosis

NLM Medline Definition: A disorder that has been classed into at least two autosomal dominant disorders chiefly characterized by the presence of multiple neurofibromas. As many as six additional types have been proposed to characterize what appear to be clinically distinct entities within this group.

Neurofibromatosis type 1: information from the NHS website

Neurofibromatosis type 2: information from the NHS website

Neurofibromatosis: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke information (US site)

Neurofibromatosis type 1: information from NORD, the National Organization for Rare Disorders (US site)

Neurofibromatosis type 2: information from NORD, the National Organization for Rare Disorders (US site)

PubMed Medline search on neurofibromatosis

Support Groups

The Neurofibromatosis Association
Give advice and information to families. Has local contacts in many parts of the country and raises funds for research.

Children's Tumor Foundation (US site)
A non-profit  medical foundation, dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses (NF).

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.

 

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