Our Vision is for a world without inherited blindness
-
Retina Australia is a not-for-profit charity. Our mission is a world without inherited
blindness. There are over 15,000 people in Australia at the moment that have been diagnosed with an inherited retinal disease, so we try and help providing information, raise money for researchers and doing what we can to make life easier for people with an inherited retinal disease. I have retinitis pigmentosa. The progression of my vision loss has been gradual over 60 years. I was diagnosed at five years of age, and now at 69, are totally blind. -
So my name is Jane Cherry. I’m on the board of Retina Australia, and I have inherited retinal disease called retinitis pigmentosa. It sort of manifests mostly as the tunnel vision. Over time, that tunnel just gets narrow and narrower. It takes a long time for my eyes to adjust, going from dark to light or light to dark. Oh, it mostly affects my night vision, so just trying to navigate, you know, at night time or in dimly lit bars and restaurants is really difficult. I’ve also had to stop driving. So little things like that just sort of start to make you feel just a little bit smaller.
-
So I found Retina Australia quite early on after I was diagnosed, because I didn’t know anyone else with the condition, I was just looking for someone else with that same shared experience. Cause I was feeling quite isolated, so I just was trying to find some community to connect into, and I found that with Retina Australia. So I became a member, which got me access to all these webinars that they did on different, you know, therapies and things that were going on. I joined their fundraising activities. So through that I met some of the team and I found this really, really welcoming and supportive community that’s really nice to be part of.
-
Retina Australia, since 1983, has funded over 6 million worth of research, all to do with inherited retinal diseases.
-
I’ve been involved with Retina Australia for many years now, both as a recipient of funding. So when people generously donate to Retina Australia it supports programs like mine so that we can get this research happening and direct it to patients. I’ve also really appreciated being able to work with Retina Australia to get experiences from people that have these conditions so that people can tell me what’s interesting to them and what research we should be focusing on. And so that’s really one of the big strengths of Retina Australia, is this direct communication with the research landscape. Discovering new treatments for inherited retinal diseases is a long process. So we have to take it from basic science in the laboratory through natural history studies of people that have inherited diseases and then straight to clinical trials. And so it’s a really long process which also means an expensive process. So support from donors like at Retina Australia really helps us to achieve our goals of finding new treatments for people that have these conditions.
-
What gives me hope in the space of research is that researchers throughout Australia and the world are working very collaboratively. They’re working on all sorts of projects: gene therapies, stem cells, et cetera.
-
So I think most exciting part about the research happening is just leaps and bounds being made all the time. And, you know, even if it’s not for me, the right breakthrough isn’t there in time for me, it will be for the next generation.
-
I encourage everyone to be a supporter of Retina Australia. This can be done by being a volunteer, a donor, a member or even running a fundraising event. Please check our website for further details.
Our Mission
Our Mission is to support people affected by inherited retinal diseases.
Retina Australia is an independent, charitable organisation dedicated to supporting people affected by inherited retinal diseases. We are the only national membership organisation focused on, and solely on, inherited retinal diseases.
Through the funding of the best Australian medical research, Retina Australia aims to promote early detection, discover preventions, advance treatments, with the ultimate goal to progress towards unlocking cures into inherited retinal diseases.
We also support our inherited retinal diseases community through the provision of information and peer support services.
Our Values
Our Values guide our actions in everything we do.
Patient-Centred
Everything we do is focused on improving outcomes for people affected by inherited retinal diseases
Excellence
We strive to deliver the best outcomes through scientific quality, the highest of standards, positivity, learning and responsiveness
Integrity
We act with honesty, transparency, accountability, and reliability
Respect
We welcome and treat all people with dignity, equality, understanding and courtesy
Collaboration
We partner to maximise results for people affected by inherited retinal diseases
Strategic Plan
2026-2028
There are 6 strategic pillars to our strategic plan.
1. Research
To fund, participate, facilitate, and advocate for high quality research into the detection, prevention, and finding treatments and cures for inherited retinal diseases.
2. Information & Education
To be the primary source of trusted, accessible information and education on inherited retinal diseases, expanding public and professional awareness.
3. Support
To provide individuals and families affected by inherited retinal diseases with reliable guidance, opportunities for peer connection, and referrals to support and specialist services.
4. Advocacy & Awareness
To elevate awareness of IRDs and amplify the voices of those affected to influence policy, funding and health system decisions.
5. Sustainability
To ensure the long-term financial, operational and reputational sustainability of Retina Australia.
6. Governance
To strengthen organisational governance to ensure transparency, accountability and effective decision-making.
Our History
1983
Originally known as the Australian Retinitis Pigmentosa Association, Retina Australia was incorporated in 1983.
It was formed after founding member, Bob Daniels, returned from the International Retinitis Pigmentosa Association Congress in Baltimore, full of enthusiasm and determined to instigate Australian research to cure eye diseases previously placed in the ‘too hard basket’.
It was made up of the State based bodies from Western Australia, South Australia, Victoria and New South Wales. The aim was to combine funds raised by the States and allocate them to Australian medical researchers in the field of inherited eye disease.
1993
After the International Retinitis Pigmentosa Association became Retina International and broadened its scope to focus on not just Retinitis Pigmentosa but all inherited retinal diseases, the Australian Retinitis Pigmentosa Association followed suit and the organisation was renamed Retina Australia.
2019
Retina Australia became a single, fully national body with a national office in Melbourne. A new Constitution governs the national body.
2022
In October 2022, Retina Australia welcomed its inaugural Chief Executive Officer, Julia Hall.
2023
October 2023 will celebrate Retina Australia’s 40 years since incorporation, advancing medical research and providing information and support for people affected with inherited retinal diseases.
2026
In late January, Retina Australia was delighted to announce the appointment of Jonathan Brookes as its new Chief Executive Officer to lead the organisation through its next phase of growth, strengthening advocacy and awareness of inherited retinal disease, continuing support of individuals and families affected, and advancing funding, collaboration and participation in impactful, high-quality research.
Over the years we have funded research into areas including gene therapy, stem cell therapy, artificial prostheses, and the psychological or sociological aspects of living with an inherited retinal disease. Our members have also contributed to research through personal interviews and non-invasive testing. As well, Retina Australia has participated in research steering and advisory committees, and as a partner in significant projects aimed to benefit Australians with inherited retinal disease.
Retina Australia is proud to have been an early contributor to the Australian Bionic Eye project. With the help of a grant in 2002 of $40,000, two trained engineers developed the initial prototype of the bionic eyes. These researchers are currently involved in refining and advancing their work with funding from the Australian government.
Retina Australia also provided funds, over many years, for the Australian Inherited Retinal Disease Register & DNA Bank and continues to support their current work. This data bank, operating since 1984, is regarded as an essential element in finding a cure or treatment for inherited retinal diseases.