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 psychologists can give you support if your NF or schwannomatosis is affecting your mood or quality of life. We can offer one-to-one talking therapy, group sessions or an online service to help you manage living with your condition. Please ask a member of our team if you would like to speak to a psychologist.

Read more about our psychology service for NF and schwannomatosis.

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.

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

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

Team

Our specialist team work across many areas of the hospital.

Consultants in the neurofibromatosis service:

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

Contact us

Phone: 020 7188 1029

We answer this number Monday to Friday, 8.45am to 4.45pm.

Email: [email protected] 

We aim to respond to your email within 2 to 3 working days.

Please include your:

  • full name
  • date of birth
  • hospital number, if known
  • phone number, so we can call you back

Address: neurofibromatosis service, department of neurology, 1st floor, Southwark Wing, Guy's Hospital, Great Maze Pond, London SE1 9RT

See accessibility information for your visit to the neurofibromatosis.

We're open Monday to Friday, 8.45am to 5pm.

Clinical advice 

You can contact our nurse specialists for advice about your condition. This is only for current patients.

Phone: 020 7188 9976

Email: [email protected]

Please use email if you can. Include your:

  • full name
  • date of birth
  • hospital number, if you know it
  • phone number, so we can call you back

We may take a few days to respond.

You can also ask your GP. They will be able to contact a consultant for immediate advice. 

This is not an emergency service. Please get medical advice from your GP or emergency department (A&E) if your problem is urgent.  

If you have any queries about your appointment or to update your contact details, please contact us.

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Do you have any comments or concerns about your care?

Contact our Patient Advice and Liaison Service (PALS)

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