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
- eye doctors (ophthalmologists)
- cancer specialists (oncologists)
- a physiotherapist
- a social worker
Neurofibromatosis 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.
- 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].
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.
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
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
Last updated: 14 March 2023