Name Neurofibromatosis
Related to/Also known as Von Recklinghausen's Disease
Symptoms of Neurofibromatosis
A genetic disorder, mainly of the nervous tissue, causing benign tumours on nerve tissue anywhere in the body.

Neurofibromatosis Type 1 (Nf1) is the most common type, causing tumours (non-malignant and bumps) to form on nerve endings anywhere in the body. Other effects can include learning difficulties, social problems and epilepsy.

Neurofibromatosis Type 2 (Nf2) is a much rarer disorder of the nerve tissue, resulting in acoustic neuromas or vestibular Schwannomas on the nerve that takes messages from the ear to the brain. This can then result in progressive deafness and communication problems.

Useful national contacts Nerve Tumours UK (formerly the Neurofibromatosis Association)
Link opens in new window https://nervetumours.org.uk
Tel: 020 8439 1234
Children & young people

Childhood Tumour Trust
Charity supporting children and young people with Neurofibromatosis Type 1
Link opens in new window www.childhoodtumourtrust.org.uk

Neurofibromatosis support downloads (Nerve Tumours UK)
Information for children and young people, and for parents and teachers
Link opens in new window https://tinyurl.com/y2p7mlkg

Online resources

 The Brain Changer Arts Project (The Brain Charity)

Link opens in new window Easy-Read guide to Coronavirus from Mencap

Neurofibromatosis& COVID-19 (Coronavrus) (Nerve Tumors UK)
Link opens in new window https://nervetumours.org.uk/help/neurofibromatosis-covid-19-coronavirus

Neurofibromatosis type 1 (NHS Choices)
Link opens in new window https://tinyurl.com/y7f5e9av

Neurofibromatosis type 2 (NHS Choices)
Link opens in new window https://tinyurl.com/y7tukxx5

Neurofibromatosis Information Page (U.S. National Institute of Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/y78qsyn4

 Living with a condition (The Brain Charity)
News and Events  
Our resources

The library at The Brain Charity has a range of resources on Neurofibromatosis and on a wide range of disability-related issues.

Polly's Best Friend: A Booklet for Girls under 10 This includes copies of the Neurofibromatosis Association's booklets for children "Polly's Best Friend: A Booklet for Girls under 10" and "The Winning Goal: A Booklet for Boys under 10".