We aim to provide thorough, experienced and compassionate care for people diagnosed with porphyria.
Key points
- We see and manage all adult patients with porphyria (aged 18 years and over) as a statewide service.
- We have an experienced multidisciplinary team consisting of dermatologists, metabolic physicians, chemical pathologists and biochemists, geneticists and hepatologists.
- We have the State Reference Laboratory for porphyria, and can accurately diagnose these conditions.
- For patient-related emergencies, please contact the RMH Switchboard on (03) 9342 7000 and ask to speak to the on-call Metabolic Registrar.
What we do
At the Royal Melbourne Hospital Porphyria Expert Centre we are a team that can provide the latest diagnostic tests and treatments for all types of porphyria. These include:
- Porphyria Cutanea Tarda (PCT)
- Erythropoietic protoporphyria (EPP)
- X-linked Protoporphyria (XLP)
- Acute Intermittent Porphyria (AIP)
- Variegate Porphyria (VP)
- Hereditary Coproporphyria (HCP)
- Congenital Erythropoietic Porphyria (CEP)
Requirements for porphyria diagnosis
To diagnose porphyria, we require the following samples:
- Plasma
- Urine
- Faeces
The specimen jars/tubes need to be protected from light with aluminium foil and sent to the Royal Melbourne Hospital (RMH).
Please note that specimens can be collected and sent to the RMH by these outside laboratories:
- Melbourne Pathology
- Australian Clinical Laboratories
Urgent results and enquiries
When patients are unwell with a suspected acute attack of porphyria, only urine needs to be sent, with clinical notes: "Possible Porphyria acute attack".
Results can be available within hours.
For patient-related emergencies, please contact the RMH Switchboard on (03) 9342 7000 and ask to speak to the on-call Metabolic Registrar.
Clinic availability
Our multidisciplinary clinic occurs every second month on a Thursday afternoon.
Other clinics may also see patients for routine follow up once the diagnosis and plan is in place, depending on symptoms and organs involved.
Clinical trials and research
We provide access to clinical trials and research. For more information on our clinical trials and studies, call (03) 9342 4542 or email dermatologyresearch@mh.org.au
Referrals
How to refer a patient
We accept GP and specialist referrals:
- Use the RMH referral form or a template from your own system
- Complete and fax your referral to Specialist Clinics (Outpatients) on (03) 9342 4234
We do not accept email referrals.
What to include in your referral
As outlined by the Department of Health, referral requests should include:
- Patient demographic information
- Referrer demographic information
- Reason for referral
- Presenting problem
- Service(s) requested
- Required referral information specified by statewide or local referral criteria
- Current patient management
- Impact of the problem on the patient
- Name of the consultant and provider number (for Medicare clinics)
- Investigation reports related to the referral
Urgent and after-hours support
Referrals are triaged based on priority. In an emergency, patients can go to the Emergency Department at any time.
For advice, urgent referrals and out of hours support, call The RMH Switchboard on (03) 9342 7000 to page our registrar on call.
To diagnose porphyria, we require the following samples:
- Plasma
- Urine
- Faeces
The specimen jars/tubes need to be protected from light with aluminium foil and sent to the Royal Melbourne Hospital (RMH).
Please note that specimens can be collected and sent to the RMH by these outside laboratories:
- Melbourne Pathology
- Australian Clinical Laboratories
Urgent results and enquiries
When patients are unwell with a suspected acute attack of porphyria, only urine needs to be sent, with clinical notes: "Possible Porphyria acute attack".
Results can be available within hours.
For patient-related emergencies, please contact the RMH Switchboard on (03) 9342 7000 and ask to speak to the on-call Metabolic Registrar.
HealthPathways Melbourne provides guidance on best practice assessment and management of common medical conditions, including when and where to refer patients.
Parkville Connect is a secure web-based portal providing GPs, specialists and other health professionals with information in the Parkville electronic medical record (EMR).
Links & documents
Appointments
Contact us to change or cancel your appointment.
Interpreters and cultural support
We provide qualified, professional interpreters to help you communicate with us at any time during your stay and at your clinic appointments.
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