The Neurofibromatosis Association – trading as Nerve Tumours UK – supports those people, who have been diagnosed with Neurofibromatosis (NF), together with their carers, families, and wider support network.
Neurofibromatosis is one of the most common neuro-genetic conditions, causing tumors to grow on nerve endings.
It has many associated medical, physical and psychological conditions: 60% of those affected have learning disabilities, and up to 75% are registered as disabled. People live in constant pain, are vulnerable, and are often isolated.
More people are diagnosed with NF than those with Hereditary Muscular Dystrophy, Huntingdon’s Disease and Cystic Fibrosis combined, yet few, including medical professionals, have heard of the condition.
Nerve Tumours UK provides support and advice for people with NF, and the medical professionals involved in their care, through a Specialist Support Network, which comprises regionally-based nurses and advisors, a national helpline, and a fully accessible website, regional information days, medical guidelines, and much more.
There are more than 26,500 people in the UK who have Neurofibromatosis – and yet we only have a frontline team of12 specialists.We could really do this with your help, and you can do this by becoming a supporter or by making a donation.
To find out more, go to nervetumours.org.uk