Overview

Neurofibromatosis

We provide care and treatment if you have:

These genetic conditions of the nervous system can cause tumours to grow. The tumours are usually non-cancerous (benign) but can cause symptoms.

We are the UK's leading centre for complex NF1, and a national centre for NF2.

Our work using PET-CT scans with glucose to diagnose some tumours in NF1 is internationally recognised.

Our team includes:

consultant neurologists
clinical nurse specialists
surgeons
eye doctors (ophthalmologists)
cancer specialists (oncologists)
geneticists
psychologists
psychiatrists
a physiotherapist
a social worker

Our neurofibromatosis social worker is available for people with NF and their families. They'll support you to manage your condition and its impact on your life.

They can:

support and advise you on managing your work and education
help you to achieve good health, social and emotional outcomes
support with benefit claims
provide information about a range of Government and charitable grants
help and support you manage your daily treatment
provide emotional and practical support to you and your family to cope with changes due to ill health
provide advice for families and carers
help you access health and social care support in your local area

A member of our NF team can refer you to the social worker. You can also self-refer for social work input. Please call 020 7185 1887 or email [email protected].

Support groups

Our nurse specialists and psychologists run support groups for patients and relatives.

The aim of these groups is to educate and promote independence for our patients.

For more information, please contact our nurse specialists.

Health information

Neurofibromatosis type 1 and itching

You may find these websites helpful:

Nerve Tumours UK: providing information and support for people affected by nerve tumours in the UK
Changing Faces: charity for people with a scar, mark or condition

Our consultants

Rosalie Ferner

Shazia Afridi

Simon Eccles

Matthew Evans

Christopher Hammond

Russell Houghton

Dragana Josifova

Jonathan Lucas

Charles Nduka

Rupert Obholzer

David Pang

Amit Roy

Alistair Santhouse

Adam Shaw

Una Sheerin

Angela Swampillai

Nick Thomas

Sanjay Vijayanathan

Victoria Williams

Research and clinical trials

Research is vital to improving the care that you receive when you're unwell. You can help improve healthcare by taking part in research studies at our Trust. During your appointment, ask your healthcare professional about research. They'll be happy to tell you about research studies you could be eligible to join.

We are involved in national and international research.

Our research projects include:

using methionine PET-CT scans to improve tumour diagnosis
sleep disorders, a problem for NF1 patients
diagnosis and treatment of optic pathway glioma. This type of tumour can lead to blindness in some NF1 patients
quality of life for neurofibromatosis patients