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About us

We are an organisation managed by volunteers. Most of our volunteers are directly affected by an inherited retinal disease. We are single-minded in our determination to ensure that everything within our power is done to benefit all Australians with an inherited retinal disease.

We have as our priorities:

  • to raise community awareness of Retina Australia and inherited retinal diseases,
  • to facilitate support to individuals, families and friends affected by inherited retinal disease,
  • to be a credible and preferred source of information related to inherited retinal diseases, and
  • to raise and distribute funds for research into prevention, diagnosis, treatment and cure of inherited retinal diseases.


Establishment


Retina Australia was established in October 1983 as the Australian Retinitis Pigmentosa Association by a group of people who were personally affected by retinitis pigmentosa. These people had previously helped establish retinitis pigmentosa support organisations in Western Australia, South Australia, Victoria and New South Wales. The first board members travelled at their own expense to attend the inaugural meeting of the organisation in Adelaide, South Australia, on the lawn in the front garden of a private home.


The impetus for the formation of a national organisation was driven by Mr Bob Daniel from Western Australia who had returned from the International Retinitis Pigmentosa Association Congress in Baltimore, USA in 1982. He was full of enthusiasm and determined to instigate Australian research and find treatments or a cure for eye conditions that were then considered “too hard” to investigate. He was also interested in learning more about inherited retinal conditions so that he could share this information with other affected people.


Since then, Retina Australia has expanded to include the remaining states and territories of Queensland, Tasmania, Australian Capital Territory, and the Northern Territory. As from 1 January 2019, Retina Australia has become a fully national body with associated groups in the states and territories and a national office in Melbourne. A new Constitution governs the national body.


Initially, Retina Australia modelled itself on the United States organization Foundation Fighting Blindness, established in 1971 as a self-help group that would fundraise, or lobby to obtain funds, to promote research. However the members of Retina Australia quickly realised the importance of meeting together to share coping strategies and new information about research into inherited retinal diseases. soon realised the importance of sharing information about how to cope and carry on a relatively normal life.


To keep our members informed of research developments and other news, we regularly provide information through our websites, brochures, social media postings and regular newsletters. We also try to help the newly diagnosed by maintaining links with optometrists, ophthalmologists and blindness agencies.


Congresses


Retina Australia hosted the 5th Retina International Congress in Melbourne in 1988, and conducts a national congress every three years, rotating between the major cities in Australia’s six states and two territories.  These congresses provide the opportunity for members to meet and to hear from Australian and international researchers about their own funded research and the latest research developments in Australia and throughout the world. The next Retina Australia Congress will be held in Melbourne in October/November 2020. 


Support for research


Since its inception, Retina Australia has provided more than $A5.5 million for Australian research into inherited retinal disease.  This money has been used strategically to provide “seed” funding for researchers who have then been able to use their results to apply for government or private funding to continue their research. Over the years the funded research areas have included gene therapy, stem cell therapy, artificial prostheses, and the psychological or sociological aspects of living with an inherited retinal disease. Individual members have also personally contributed to Australian research through personal interviews and non-invasive testing.


Retina Australia is proud to have been an early contributor to the Australian Bionic Eye project, through a 2001 grant of $A40,000 for two trained engineers to develop the initial prototype the bionic eye. These researchers are currently involved in refining and advancing their work through funding provided by the Australian Government.


Retina Australia also makes the Australian Inherited Retinal Disease Register and DNA Bank a funding priority. This data bank, which commenced in Western Australian in 1984, is regarded as paramount in the work being done to improve the treatment of, or to find a cure for, inherited retinal disease.


Volunteer base


Retina Australia and its state and territory management committees have always been managed by volunteers with minimal paid administrative assistance.