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Your child's appointment with the neurofibromatosis service

Cancelling or changing your appointment 

To cancel or change your appointment, please contact the neurofibromatosis coordinator on 020 7188 4035 / 0939.

Before your appointment

Please bring the following with you to your outpatient appointment:

  • a list of your child's current medications and doses
  • the dates and names of hospitals where they 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 child's medical history and symptoms. We will ask permission to perform a general clinical and neurological examination. This includes an examination of your child's skin, bones, eyes, chest, abdomen and nervous system.

After your appointment

A letter will be sent to any relevant medical professionals, including your GP. Your child 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 on 020 7188 9976. 

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 020 7188 9976.

Useful organisation

Contact us

Tel: 020 7188 3959

Nurse advice line: 020 7188 9976

Opening times: Monday – Friday, 9am - 5pm .

How to find us

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

Map to Guy's Hospital, Southwark Wing

©  Guy's and St Thomas' NHS Foundation Trust.
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