Retina Australia

What Retina Australia does

Retina Australia is an independent, not-for-profit charitable organization founded in 1983 (originally as the Australian Retinitis Pigmentosa Association, renamed in 1993) and headquartered in Melbourne. It is the only national membership organization in Australia focused exclusively on inherited retinal diseases (IRDs), which are the leading cause of blindness in working-age adults and the second leading cause in children, affecting an estimated 19,000 Australians. The organization is governed by a volunteer Board of Directors chaired by Leighton Boyd AM, employs 12 people, and operates under ABN 26 059 846 829.

The organization operates three pillars: Research, Information, and Support. Its core Research Grants Program is an annual competitive process funding Australian medical researchers in IRD areas including gene therapy, stem cell therapy, vision prostheses (bionic eyes), and pharmaceutical treatments, with individual grants up to $60,000. Since 1989, the organization has invested over $6.8 million across more than 150 research projects, including an early contribution to the Australian Bionic Eye project. The Information pillar provides an extensive content library covering 20+ IRD types, genetic testing, clinical trials, inheritance patterns, and emerging treatments, distributed via the bi-annual Retina Reporter newsletter, monthly Retina Insider e-newsletter, and a searchable IRD Research Project and Clinical Trial Register. The Support pillar delivers peer support groups (Friends of Retina Australia Perth, nationwide Telelink), phone support, and tailored guides for newly diagnosed individuals, parents, and friends.

Revenue derives primarily from individual and corporate donations, bequests, philanthropic trusts (Flack Trust, Angior Family Foundation, Doepke Foundation, Telematics Trust), pharmaceutical company support (Apellis, Astellas, Novartis, Janssen, PYC Therapeutics), and a two-tier membership program ($30 Associate / $50 Full annually). The organization partners with IRD registries (AIRDR, VENTURE, Save Sight Institute, WARD) for patient enrollment, holds membership in Retina International, Vision 2020 Australia, and Orthoptics Australia, and is governed as a single national body since 2019. Jonathan Brookes was appointed CEO in January 2026 to lead the next growth phase.

Name

Retina Australia

Legal name

Retina Australia

Website

https://retinaaustralia.com.au

Company type

Private

Founded year

1983

Operating status

Operating

Headcount range

11–50 employees

Short description

Retina Australia is a Melbourne-based non-profit charity founded in 1983 that funds medical research, provides information, and supports Australians affected by inherited retinal diseases, having invested $6.8M in 150+ research projects since 1989.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Disease Research Funding

NAICS

Voluntary Health Organizations (813212), Scientific Research and Development Services (5417), Other Individual and Family Services (624190), Services for the Elderly and Persons with Disabilities (624120)

SIC

Services-Social Services (8300), Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

Retina & Vitreous Specialists (HLAKAKAE)

Keywords

• Inherited retinal disease research
• Medical research grants
• Patient advocacy services
• Vision loss support
• Genetic disease information

Headquarters

HQ city

Melbourne

HQ country

Australia

HQ region

Oceania

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Others, Personnel, Marketing or Sales, Operations, Infrastructure

Revenue model

1. Donations: Retina Australia receives donations from individuals, corporations, and charitable foundations to fund research grants and operational activities.
2. Membership Fees: Two-tier membership structure: Associate membership at $30 annual fee and Full membership at $50 annual fee with voting rights. Members receive newsletters, webinar invitations, and access to peer support groups.
3. Bequests and Planned Giving: The organization encourages supporters to leave gifts in their wills as part of long-term fundraising strategy.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels7 records

Core offering

Retina Australia is an Australian not-for-profit charity that funds medical research into inherited retinal diseases (IRDs) through an annual competitive Research Grants Program, provides comprehensive information and educational resources about IRDs and emerging treatments, and delivers peer and phone support services to people affected by IRDs and their families. Core activities include the IRD Research Project and Clinical Trial Register, bi-annual Retina Reporter and monthly Retina Insider newsletters, peer support groups, and a two-tier membership program.

Product overview

Retina Australia is a not-for-profit charity organization (not a technology product company) that provides research funding, information resources, and support services for Australians affected by inherited retinal diseases. The organization operates a Research Grants Program funding Australian medical researchers, delivers educational content through newsletters (Retina Reporter and Retina Insider), maintains an IRD Research Project and Clinical Trial Register database, offers peer and phone support services, and manages a membership program. The organization does not offer a software product or technology platform with integrations.

Differentiator

Problem solved

Functional benefit

Products and services

• Research Grants Program
• Information Resources

Quantifiable outcome

• $6.8 million invested in 150+ research projects since 1989
• +2 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eleven partnerships are on record, tiered core and minor.

• Retina InternationalcoreStrategic or Co-development PartnerGlobal umbrella organization for patient-led charities supporting research into rare, genetically inherited and age-related retinal diseases. Retina Australia is a member and has representatives on Retina International's Boards and Committees including Professor Erica Fletcher and Professor Lauren Ayton AM on the Scientific & Medical Advisory Board.
• Vision 2020 AustraliacoreStrategic or Co-development PartnerNational peak body for the eye health and vision care sector representing around 50 member organizations involved in eye care, health promotion, low vision support, vision rehabilitation, eye research, and community support. Retina Australia is an Associate Member.
• Ross House AssociationcoreStrategic or Co-development PartnerSupports independent not-for-profit groups working towards environmental and/or social justice. Provides affordable, accessible office space to over 50 member organizations. Retina Australia is a member and their office is located at Ross House in Melbourne.
• Orthoptics AustraliaminorStrategic or Co-development PartnerNational peak body representing orthoptists in Australia. Retina Australia is an Eye Health Partner, supporting excellence and equity in eye health care.
• Apellis PharmaceuticalsminorOthersPharmaceutical company supporter of Retina Australia. Apellis developed SYFOVRE (pegcetacoplan), the first TGA-approved treatment for geographic atrophy in Australia.
• Janssen (Johnson & Johnson)minorOthersPharmaceutical companies of Johnson & Johnson supporting Retina Australia's mission.
• Perth Eye FoundationminorOthersPerth-based eye foundation that co-funded a 2024 research grant ($60,000) for Stargardt disease research at Lions Eye Institute.
• NovartisminorOthersPharmaceutical company supporter of Retina Australia.
• AstellasminorOthersPharmaceutical company supporter. Astellas developed IZERVAY (avacincaptad pegol), the second TGA-approved treatment for geographic atrophy in Australia.
• Community UnderwritingminorOthersCommunity underwriting agency supporting Retina Australia.
• SpecsaversminorOthersOptometry retail chain supporting Retina Australia.

Scale indicators5 records

Recent moves9 records

Expansion highlights5 records

Direct peers

• Retina International: Global umbrella organization for patient-led retinal disease charities, of which Retina Australia is a member. Directly comparable as a peer-led nonprofit funding IRD research and supporting patients across multiple countries.
• Fight for Sight: UK charity funding eye research including IRDs and supporting people with vision loss. Comparable disease-specific research funding and patient advocacy operating model.
• Foundation Fighting Blindness: Major US-based nonprofit funding inherited retinal disease research and providing patient support. Closest functional analog in scale, mission, and patient-community model, though operating in the US rather than Australia.
• Macular Disease Foundation Australia: Australian charity focused on macular diseases including age-related macular degeneration and geographic atrophy. Closest domestic peer in eye-disease-specific charity model and Australian geographic footprint, though focused on macular rather than inherited retinal disease.

Broad incumbents

• Lions Eye Institute: Perth-based eye research and clinical institute that co-funded a 2024 Stargardt disease grant with Retina Australia. Comparable research mission with some IRD focus, though operates more broadly across ophthalmology.
• Cystic Fibrosis Foundation: Large US disease-specific nonprofit that funds research and patient support. Comparable mission model of funding scientific research for a single disease area and supporting affected patients and families.
• Vision 2020 Australia: Australian peak body for the eye health sector representing ~50 member organizations. Comparable domestic nonprofit operating in eye health, but broader remit across all vision issues rather than IRD-specific.
• Centre for Eye Research Australia (CERA): Leading Australian eye research institute that has received Retina Australia grant funding. Comparable in research focus on eye disease including IRDs, though structured as a research institute rather than a donor-funded charity.

Regional players

• Fighting Blindness Canada: Canadian charity focused on retinal disease research funding and patient support. Strong model overlap but operates in a different national market.
• Save Sight Institute: NSW-based eye research institute running an IRD registry in partnership with Retina Australia. Comparable in IRD research focus and Australian geographic footprint.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/RetinaAustralia
• YouTubeyoutube.com/channel/UCoKO7tWGlQ9s7Uqmx9ELhrg
• Facebookfacebook.com/RetinaAustralia
• LinkedInlinkedin.com/company/retinaaustralia
• Instagraminstagram.com/retinaaustralia

Revenue estimate

Valuation estimate

Number of profiles

Profiles14 records

Funding overview

Funding rounds

Investors

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Retina Australia