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Australian Fabry Services / Clinics

Fabry disease, is a progressive multisystem disease. The disease is X-linked with generally more severe manifestations in males, but can impact on quality of life (QoL) of both male and female patients. Fabry patients are encouraged to be seen  at a Fabry Clinic (whether or not they receive ERT) to keep an eye on progression of Fabry Disease symptoms. Frequency of visits is usually 1-2 times a year but it can vary from clinic to clinic and patient to patient. A General Practitioner will need to write a referral for Fabry patients to see a clinic. The Fabry Clinic manage appointments with support from a nurse. Some Fabry Clinics offer outpatient clinical service for ongoing clinical care including; blood tests, 24 hour urine collection tests to review kidney function, ECG for the heart, hearing tests, MRI's on brain - all within the same hospital clinic appointment. Some clinics refer such services to private appointments or other clinics to be managed by the Fabry patients/ families themselves.  All Clinics offer similar services but there is variation in how the services are managed depending on resources available to them. Most clinics collect data from Fabry patients and enter the data into either the Fabry Registry (funded by Sanofi Genzyme) or the Fabry Outcome Survey/ FOS (funded by Shire). Some patients enter data into both the two registries. Long term, Fabry Australia would like to see one registry developed independent of any pharmceutical company especially as more and more therapeutics are being studied for Fabry disease patients.

Fabry Australia would like to see Fabry patients supported by Fabry Clinics which aim at providing 'best practise' and services, research opportunities that are consistent throughout the country. Clinics that are embedded in the healthcare system to ensure they are sustainable and independent.

Royal Adelaide Hospital 

Associate Professor Ian Chapman
Internal Medicine
Location: Royal Adelaide Hospital
Email: ian.chapman@adelaide.edu.au
Phone: +61 8 8222 4162

Royal Brisbane and Women's Hospital (QLD)

Dr Charles Denaro
Internal Medicine & Aged Care
Location: Royal Brisbane & Women's Hospital (QLD)
Email: c.denaro@uq.edu.au
Phone: +61 7 3646 7678

Royal Melbourne Hospital (VIC & TAS)

Dr Kathy Nicholls
Nephrologist
Location: Royal Melbourne Hospital
Address: Grattan St, Parkville, VIC, 3050
Phone: +61 3 9342 7143

Royal Perth Hospital (WA)

Dr Mark Thomas

Nephrologist
Location: Royal Perth Hospital 
Address:  197 Wellington St, Perth WA 6000
Email:  mark.thomas@health.wa.gov.au
Phone: +61 89224 2550

Westmead Hospital

Dr Michel Tchan
Metabolic Clinic
Location: Westmead Hospital (NSW & ACT)
Email: michel.tchan@health.nsw.gov.au
Phone: +61 2 9845 9780

Australian Paediatric Fabry Clinics

Royal Children's Hospital (VIC)

Dr Heidi Peters and Dr Joy Lee
Clinical Metabolic Services
Location: Royal Childrens Hospital (VIC)
Email: metabolic@rch.org.au
Phone: +61 3 9345 6251

Women's and Children's Hospital (SA) 

Dr Drago Bratkovic
Metabolic Clinic
Location: Women's and Children's Hospital, SA
Email: drago.bratkovic@health.sa.gov.au
Phone: +61 8 8161 6726

Royal Children's Hospital (QLD) 

Dr Jim McGill
Metabolic Medicine
Location: Royal Children's Hospital (QLD)
Email: jim_mcgill@health.qld.gov.au
Phone: +61 7 3646 8111

King Edward Memorial Hospital (WA) 

Associate Professor Nicholas Pachter
Genetic Services of Western Australia
Location: King Edward Memorial Hospital (WA)
Email: Nicholas.Pachter@health.wa.gov.au
Phone: +61 6458 1525

The Children's Hospital at Westmead (NSW) 

Dr Carolyn Ellaway
Genetic Metabolic Disorders Services
Lysosomal Disorders Multidisciplinary Management Clinic
Location: The Children's Hospital at Westmead (NSW)
Email: carolyn.ellaway@health.nsw.gov.au
Phone: +61 2 9845 3654

New Zealand Centre - Auckland

Auckland City and Starship Children's Hospital (Auckland NZ) 

Dr Emma Glamuzina
Metabolic Consultant
Adult and Paediatric National Metabolic Service
Location: Auckland City and Starship Children's Hospital
Email: eglamuzina@adhb.govt.nz
Phone: +6421403617