Lee Fyfe



Job Title Clinical Nurse - Neurogenetics
Organisation Name East Metropolitan Health Service / Royal Perth Hospital (RPH), WA
Areas of Special Interest

Myotonic dystrophy
Duchenne and Becker muscular dystrophy
Facioscapulohumeral muscular dystrophy (FSHD)
Spinal muscular atrophy (SMA)

Adults or Children Adults and Children
Clinic Services Neurogenetic Clinic (RPH) - Neurologist, nurse, physiotherapist, speech pathologist
Clinic Contact details

08 9224 3353

Clinic days/times Location: Royal Perth Hospital and Perth Children's Hospital
Weekly - Tuesday (pm) and Thursday (am)
Monthly - Friday (pm)
Telehealth consults Available
Transitional Planning – Paediatric to adult services Available
Transitional Planning Information In consultation with PCH Neuromuscular Liaison Nurse - developed a pamphlet to provide to patients transitioning into adult services; and process of developing a clinical tool to identify when a patient is suitable to transfer to adult services (also with liaison nurse - PCH).
Additional Information

Patient information pamphlets:
Transferring to the Adult Neurogenetic Clinic at Royal Perth Hospital
Muscle Biopsy
First Appointment – Neurogenetic Clinic



Phone 08 9224 3353

Lee Fyfe

is prepared to be contacted by other Health Professionals
Additional Clinical Information

Clinical Information
2017 Standard of Care for Spinal Muscular Atrophy (SMA)
Care pathways for people with neurodegenerative and neuromuscular conditions (NSW Agency for Clinical Innovation)
Standards of care and management of Facioscapulohumeral Muscular Dystrophy
Information for Patients
Facts about Spinal Muscular Atrophy
What is Myotonic Dystrophy?
Duchenne and Becker type Muscular Dystrophy
What is FSHD?

European Reference Networks (ERNs)

European Reference Networks (ERNs)
ERN are networks for clinicians and researchers to share expertise, knowledge and resources, this information may be of use to Australian health professionals and researchers.
ERN on neuromuscular diseases

For links to online portals that provide information on rare diseases including definitions, causes, treatments, and publications for patients, families and professionals in the field. Please see our conditions page.