NF Clinics

The Neurofibromatosis Clinic

Location: Corner Hawkesbury Road and Hainsworth Street, Westmead, NSW, 2145

Clinical Nurse Specialist:  Puja Poudel

Clinic Enquiries: (02) 9845 1325, schn-chw-neurogenetics@health.nsw.gov.au

Website: https://www.schn.health.nsw.gov.au/neurogenetics-childrens-hospital-westmead

Overview:

The NF Clinic at CHW provides specialist multidisciplinary care for children and adolescents with complex Neurofibromatosis Type 1 (NF1) and NF2-related Schwannomatosis.

Patient Group: Children under the 16 years

Service area: NSW and ACT

Clinic Frequency: Wednesdays, 2:00pm-5:00pm

NF Conditions Managed:

• Complex Neurofibromatosis Type 1 (NF1)
• NF2-related Schwannomatosis

Follow-Up and Review Frequency: Dependent on requirements.

Referral Criteria:

The clinic accepts new referrals for children under the age of 16 years who:

• Have NF2, or
• Have complex NF1 requiring specialist input or services at CHW that are not available locally.

 Complex NF1 is defined as:

• A growing/painful plexiform neurofibroma
• Optic pathway glioma
• CNS/spinal cord tumour
• Epilepsy
• Pseudoarthrosis
• Receiving investigational drugs
• Heavy disease load

A diagnostic service is available for children who live in the Western Sydney Local Health District.

The NF Clinic do not provide ongoing follow up for children with currently uncomplicated NF1.

Click to see the referral criteria for Clinicians

Neurofibromatosis (NF) Clinic

Location: 50 Flemington Road, Parkville, VIC

Clinical Nurse Consultant:  Kylie Clark

Clinic Enquiries: Neurology.Department@rch.org.au

Overview:

The NF Clinic at RCH provides specialist multidisciplinary care for children and adolescents with confirmed Neurofibromatosis Type 1 (NF1) and NF2-related Schwannomatosis. Patients have access to a specialist NF multi-disciplinary team including:

• Paediatric neurologist
• Dedicated NF paediatrician
• Ophthalmology (Eye Clinic)
• Plastic surgery
• Genetic counselling
• Neuropsychology Services
• NF Clinic Registered Nurse

Patient Group: Children and adolescents under 18 years

Service area: Victoria

Clinic Frequency: Held every second Wednesday

NF Conditions Managed:

• Neurofibromatosis Type 1 (NF1)
• NF2-related Schwannomatosis

Follow-Up and Review Frequency: Dependent on requirements. 6-12 months.

Referral Criteria:

The clinic accepts new referrals for children under the age of 18 years who have:

A confirmed genetic or clinical diagnosis of NF1 or NF2-related Schwannomatosis

If the diagnosis is not confirmed, the patient will be referred to the General Genetics Clinic for assessment, before being accepted into the NF Clinic

Referral Pathway (for Clinicians):

• Referrals are accepted from Generals Practitioners (GP’s) and medical specialists
• Referrals must be completed using the RCH referral form
• Referrals should be Faxed to (03) 9345 5034

Neurosurgery Neurofibromatosis (NF) Clinic

Location: Level 4 South West, 300 Grattan Street, Parkville, Victoria

Clinic Enquiries: (03) 9342 8959

Overview:

The clinic generally offers:

• Multidisciplinary assessment of NF1-related neurosurgical conditions
• Review and interpretation of MRI and other imaging
• Monitoring of tumour growth and neurological status
• Surgical consultation and planning where appropriate
• Coordination with other specialties (e.g. neurology, oncology, genetics)

Patient Group:  Adults 18 years and over

Service area:  Victoria, including residents of other Victorian health districts

Clinic Frequency: Held quarterly

NF Conditions Managed:

• Neurofibromatosis Type 1 (NF1)

Follow-Up and Review Frequency: 

• Follow-up schedules are individualised depending on the patient’s condition, tumour type, and symptoms
• Some patients may require regular monitoring (e.g. annually or more frequently), while others may be reviewed on an as-needed basis

Referral Criteria

Patients are typically referred to the Neurosurgery NF Clinic for:

• Assessment or management of neurofibromatosis (NF1)-related pain, possible tumours affecting the brain or spine
• Evaluation of symptoms such as headaches, neurological deficits, or concerns about tumour progression
• Review of imaging that suggests central nervous system involvement
• Surgical opinion regarding known or suspected NF1-related lesions

 
Referral Pathway (for Clinicians)

• Referrals are accepted from GP’s and specialists
• Referrals must be completed on the RMH referral form
• Referrals are required to be Faxed to Specialist Clinics (Outpatients): (03) 9342 4234
• Email referrals are not accepted

GP Referral Information Line: (03) 9139 4770

The Rasopathy Clinic 

Location: 15 Hospital Ave, Nedlands, WA

Overview:

Patients have access to a paediatrician and genetic counsellor during their appointment and are also linked in with a range of specialist services as required, including:

• Ophthalmology
• Neurology
• Dermatology
• Oncology

Patient Group: New referrals accepted from 0-16yrs

Service area:  Western Australia

Clinic Frequency: Monthly

NF Conditions Managed:

• Neurofibromatosis Type 1 (NF1)

Follow-Up and Review Frequency: 

• Under 5 years: Every 6 months
• 5 years and over 5 years:  Annually if clinically stable

Referral Criteria

All referrals must be submitted via the Central Referral Service (CRS)

The clinic only accepts children with confirmed diagnosis of NF1

Referral Pathway (for Clinicians)

• Referrals are accepted from General Practitioners (GP’s) and medical specialists
• Referrals to be addressed to the Department of General Paediatrics - RASopathy Clinic

Age Range: 0+ years

Accepts referrals from: GP, Paediatrician and Specialists

Conditions seen: NF1, NF2-related SWN and SWN (including undiagnosed)

Referrals: Must be within area

NF Clinic Appointment Contact

Martin Good

Department of Clinical Genetics, Royal North Shore Hospital

Phone: (02) 9463 1727

Email: NSLHD-clinicalgenetics@health.nsw.gov.au

NF Skin Clinic

Referral: Assoc. Prof Yemima Berman

Fax: (02) 9463 1057