If your child is affected by a disability or medical condition we can help. Call our freephone helpline on 0808 808 3555 to get information, support and advice. You can also browse our range of parent guides on aspects of caring for a disabled child in our resource library.

To meet other parents see support groups below or meet other parents online in our closed Facebook group

Please see below for reliable medical information on Neurofibromatosis produced by alternative providers.

NHS website (Type I) (Type II)

Although alternative links have been selected with great care, Contact  cannot accept responsibility for any inaccuracies or errors. Alternative information providers give details of their quality control procedures on their website, which includes review of information by a qualified medical professional.

Is there support?

Nerve Tumours UK

Tel: 020 8439 1234
Helpline: 07939 046030

Nerve Tumours UK is a Registered Charity in England and Wales No. 1078790. It provides information and support to those affected by Neurofibromatosis and Schwannomatosis. They have a network of specialist advisors based in hospitals around the UK.

Group details last reviewed June 2023.

Childhood Tumour Trust


The Trust is a Registered Charity in England and Wales No.1165777. They provide opportunities for children and young people with Neurofibromatosis 1 to attend camps in the UK and USA, raise awareness, campaign for better care and organise family days out.

Group details last reviewed June 2023.

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