Neurofibromatosis

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 either email us, or use e-RS. We do not accept referrals sent by post. Please include correct contact details for the clinician making the referrals.

All other referrals can be emailed to us.

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. There is currently no referral form

Urgent referrals

If you think the 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.

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.

Documents needed

Please complete the referral form.

Along with the referral form, please also 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

We accept referrals if the 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

We do not accept:

• patients with 1 isolated tumour (unless NF1 or schwannomatosis is suspected)
• patients who carry a schwannomatosis gene variant, but have no symptoms

Documents needed

Please complete the referral form.

Along with the referral form, please also 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

We accept referrals if the 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.

Documents needed

• 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)