Neurofibromatosis
Referrals
Making a referral
We accept referrals from GPs and hospital consultants. Patients cannot self-refer.
We check all referrals and prioritise them according to medical need.
GPs should email us, or use the NHS e-Referral Service (e-RS).
We do not accept referrals sent by post.
Please include correct contact details for the clinician making the referral.
To help us review referrals quickly, please make sure:
- Neurofibromatosis Type 1 (NF1) (children and adults) and schwannomatosis (adults only) referrals come with the completed referral form, and other requested documents
- Neurofibromatosis Type 2 (NF2) referrals come with all relevant documents
Urgent referrals
If you think your patient may have a cancer-related problem, please send your referral to us and to the relevant oncology service.
We do not provide a 2-week wait cancer pathway, but we can see urgent patients quickly if needed.
Please refer to us and a local sarcoma service if your patient has:
- a tumour growing quickly
- a tumour becoming hard, or causing new or worsening pain (especially at night)
- a new nerve problem
Please refer to us and a local neurosurgery or neuro-oncology service if your patient has:
- a new nerve problem
- signs of spinal cord compression
- new seizures
- signs of raised intracranial pressure
Adult NF1 referrals
We see adults with complex NF1.
Please see the referral form for the criteria of what makes complex NF1.
We accept referrals if the patient has a known diagnosis, or a suspected diagnosis based on symptoms, scans or family history.
Adults with uncomplicated NF1 may be better cared for by another specialist team.
Please complete the referral form.
Along with the referral form, please include:
- referral letter (for GP referrals please include a full past history and current medications)
- clinic letters and results
- histology reports (if relevant)
- imaging via IEP (for hospital referrals)
- imaging details (for GP referrals)
Schwannomatosis referrals
Referral criteria
Inclusion criteria
We accept referrals if your patient has:
- 2 or more schwannomas (with at least 1 confirmed by biopsy)
- 1 schwannoma, as well as a gene change in SMARCB1 or LZTR1
Exclusion criteria
We do not accept people:
- with 1 isolated tumour (unless NF1 or schwannomatosis is suspected)
- who carry a schwannomatosis gene variant, but have no symptoms
Please complete the referral form.
Along with the referral form, please include:
- referral letter (for GP referrals please include a full past history and current medications)
- clinic letters and results
- histology reports (if relevant)
- imaging via IEP (for hospital referrals)
- imaging details (for GP referrals)
NF2 related schwannomatosis referrals
Referral criteria
Inclusion criteria
We accept referrals if your patient has:
- tumours on both hearing/balance nerves (bilateral vestibular schwannoma)
- 1 vestibular schwannoma, as well as another tumour
- a confirmed NF2 gene variant
- a single vestibular schwannoma diagnosed before age 30
We also see suspected mosaic NF2, and families with inherited NF2.
Please send the following documents:
- referral letter (for GP referrals please include a full past history and current medications)
- clinic letters
- audiology reports
- histology reports (if relevant)
- imaging via IEP (for hospital referrals)
- imaging details (for GP referrals)
Contact us
Phone: 020 7188 0129
Email: [email protected]
Address: Neurofibromatosis Centre, 1st floor, Southwark Wing, Guy's Hospital, London SE1 9RT
Last updated: February 2026