Australian Porphyria Association
What is Porphyria?
There are eight different types of porphyria which are all caused by a build up of porphyrins in the cells of the body. Porphyrins are substances that are required for the production of red blood cells. People who have porphyria can experience a wide range of symptoms, depending on the type of porphyria they have. Some types of porphyria impact the nervous system whilst other types impact the skin.
Our Purpose
The Porphyria Association Inc. (Australia) was established in 1987 by a group of individuals who had been touched in some way by porphyria. The purpose of the Association is to provide much needed support services to the Australian porphyria community. We provide peer support, promote education and assist with patient advocacy for all types of porphyria. The Association is run by passionate volunteers who strive to improve awareness of porphyria and to educate individuals with porphyria, their relatives, carers and medical personnel. At present, the Association is run by both professional and non-professional volunteers in order to promote diversity within our organisation.
What We Do
Awareness
Providing awareness though the social media campaigns, publishing literature and being involved in the global rare disease community.
Peer Support
The association provides peer support though email or phone to people who may be seeking a diagnosis or have been diagnosed.
Education & Research
The association regularly engages with the medical research community we host bi-annual conferences, and provide educational materials to medical journals for publication.
Contact Us
If you are in need of support or just want to ask a question, we are available to talk.
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Our contact hours are Monday to Friday 10am to 4pm
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Contact us on: +61 401 007 461 (new contact number) or
Email: info@porphyria-australia.org
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Our mailing address is:
PO Box 2077
Royal Melbourne Hospital, VIC 3050
