Neurofibromatosis information for patients

Providing diagnosis, management and ongoing care for our patients

Location

  • Guy's Hospital
    1st floor, Southwark Wing
    Great Maze Pond
    London SE1 9RT

    Tel: 020 7188 1029

    Nurse advice line: 020 7188 9976
    Opening times: Monday – Friday, 9am - 5pm

  • Southwark Wing

    Download map to neurofibromatosis department (PDF 980Kb)

Cancelling or changing your appointment 

To cancel or change your appointment, please contact the neurofibromatosis coordinator on  020 7188 1029 or email gst-tr.nfadmingstt@nhs.net

Before your appointment

Please bring the following with you to your outpatient appointment:

  • a list of your current medications and doses
  • the dates and names of hospitals where you have had any recent scans
  • names of doctors and hospitals where you have been seen previously. 

What you can expect at your appointment

Your first appointment may take around one to two hours. Our team works across many different departments, so you may see one or more members of the team in a single visit.

You will be asked in detail about your medical history and symptoms and we will ask permission to perform a general clinical and neurological examination. This includes an examination of your skin, bones, eyes, chest, abdomen and nervous system.

Our clinics for children are held at the same location. For information about our children's service, see the Evelina London Children's Hospital website.

After your appointment

A letter will be sent to any relevant medical professionals, including your GP. You may be referred for further assessments or investigations, or to other healthcare specialists.

If you have any issues or concerns after your appointment, please call the nurse advice line listed at the top of this page. 

Support groups

Our clinical nurse specialists and psychologists run neurofibromatosis support groups for our patients and their relatives. The aim of these groups is to inform, educate and promote independence in people with neurofibromatosis.

For more information, please call our nurse advice line on listed at the top of this page.

Useful websites