Porphyria Association Inc. Australia
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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.
The Porphyria Association Inc. (Australia) aims: To raise awareness of the issues faced by people living in Australia with both acute and cutaneous porphyria. To provide scientifically accurate information to help reduce the stigma that individuals with porphyria can experience. To educate physicians and other healthcare professionals about the porphyrias to promote early diagnosis and optimal treatment, hopefully improving the quality of life of people living with porphyria. To provide emotional support for individuals who have porphyria, their family members and carers at the time of diagnosis and throughout their journey with porphyria. To host regular meetings where people with porphyria and their families and carers can meet, providing a space for further peer support. To support fundraising efforts to raise money for research and awareness of porphyria. To facilitate and encourage medical and scientific research in the field of porphyria. What we do
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Association Meetings
Meetings are held with the kind support of the Genetic Support Network of Victoria at the Murdoch Children’s Research Institute at the Royal Children's Hospital in Melbourne, Australia. Meeting dates vary but are held every second month. We will provide notice of the dates at least three weeks prior to general meetings and six weeks prior to our Annual General Meeting. Next meeting date and information

 

 

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