Lee Fyfe

Profession	Nurse
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

Email	beverly.fyfe@health.wa.gov.au
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
ERN EURO-NMD

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.