Retina South Africa

What Retina South Africa does

Retina South Africa is a national non-profit patient advocacy organization (NPO 003-184) founded in 1980 and headquartered in Germiston, Gauteng. It operates as the only patient-led advocacy and support group in South Africa for individuals affected by retinal degenerative conditions, including Retinitis Pigmentosa, Macular Dystrophies, Stargardt Disease, Usher Syndrome, and Age-Related Macular Degeneration. The organization is governed by an elected Management Committee of eight members — including Chairman Manny Moodley, Vice-Chair Anton van Rooyen, Treasurer Jean Bowler, and Secretary Claudette Medefindt — and is supported by a small professional staff (Head of Advocacy and Education, Events Co-ordinator, Social Worker, and Orientation and Mobility practitioner), with regional offices in Port Elizabeth, Cape Town, and Durban providing national coverage.

The service portfolio spans patient-facing support, research facilitation, and educational content delivery. Core offerings include free personalized counselling, genetic testing facilitation in partnership with the University of Cape Town and the National Health Laboratory Services, and clinical trial enrolment assistance routed through the My Retina Tracker patient registry operated jointly with Foundation Fighting Blindness USA. Educational content is distributed via the Retinal Realities podcast (36+ episodes, sponsored by Roche Products South Africa), webinars, the Out of Sight newsletter, and condition-specific resources on retinasa.org.za. Adjacent programmes include a Youth Empowerment initiative led by a dedicated Youth Team, assistive-technology guidance, NSFAS education-support referrals, and Para-Sport Development activities. A related accessibility product, the Umsizi Reader app, supports all 11 official South African languages through OCR and text-to-speech functionality.

Revenue is generated through a diversified non-profit model comprising Section 18a tax-deductible donations (certificates issued for contributions over R250), membership subscriptions, flagship event fundraising (Dis-Chem Ride for Sight, Bowls for Sight, Padel for Sight, Swing for Sight), and corporate partnerships including the Woolworths MyDifference loyalty programme and Roche product sponsorship. The organization is a member of the South African National Council for the Blind (SANCB) and is represented on the WHO Technical Advisory Group on Assistive Technology. No revenue figure is publicly disclosed; the 2024 AGM reported the most favorable financial results since the COVID pandemic.

Name

Retina South Africa

Legal name

Retina South Africa

Website

https://retinasa.org.za

Company type

Private

Founded year

1980

Operating status

Operating

Headcount range

11–50 employees

Short description

Retina South Africa is a national non-profit patient advocacy organization supporting South Africans with retinal conditions through counselling, genetic testing facilitation, clinical trial enrolment, educational content, and fundraising events across regional offices.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Support Services

NAICS

Other Individual and Family Services (624190), Individual and Family Services (6241)

SIC

Services-Social Services (8300)

akta.pro primary industry

Retina & Vitreous Specialists (HLAKAKAE)

akta.pro secondary industries

Low Vision & Assistive Vision Devices (Magnifiers, Electronic Video Magnifiers, Wearable Vision Aids) (HLAHAJAN), Ocular Imaging & Diagnostic Testing Centers (HLAKAKAN)

Keywords

• Patient advocacy services
• Retinal condition support
• Genetic testing facilitation
• Clinical trial enrolment
• Low vision counselling

Headquarters

HQ city

Gauteng

HQ country

South Africa

HQ region

Africa

Offices4 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others, Technology or R&D

Revenue model

1. Donations and Fundraising: Tax-deductible donations (Section 18a) for donations over R250, fundraising events, and campaign participation.
2. Loyalty Programme Partnerships: Partnership with Woolworths MyDifference loyalty programme where shoppers can select Retina South Africa as their beneficiary, generating donations through everyday shopping.
3. Membership Fees: Membership programme enabling patients and families to join the Retina South Africa community.
4. Event Fundraising: Revenue from events including Dis-Chem Ride for Sight, Bowls for Sight, and other fundraising activities.

Pricing tiers

Go-to-market motion3 records

Distribution channels4 records

Marketing channels7 records

Core offering

Retina South Africa is a non-profit patient advocacy and support organization that provides counselling, genetic testing facilitation, clinical trial enrolment assistance, assistive technology guidance, and youth empowerment programmes for South Africans living with retinal conditions such as Retinitis Pigmentosa, Stargardt Disease, Macular Dystrophies, Usher Syndrome, and Age-Related Macular Degeneration. It also delivers educational content through the Retinal Realities Podcast, webinars, and newsletters, and raises funds through annual events including Dis-Chem Ride for Sight, Bowls for Sight, Padel for Sight, and Swing for Sight.

Product overview

Retina South Africa is a patient-led advocacy and support organization (NPO 003-184) for individuals with retinal conditions, not a product company. The organization operates as a unified platform offering multiple interconnected support services: patient advocacy and counselling, genetic testing facilitation, clinical trial enrolment assistance, the Retinal Realities Podcast as an educational and community platform, Youth Empowerment Programs, Technology Assistance resources, educational webinars, annual fundraising events (Bowls for Sight, Ride for Sight, Padel for Sight), and NSFAS education support referrals. These services are delivered through the organization's national office in Germiston with regional offices across South Africa, forming an integrated support ecosystem for people affected by retinal vision loss.

Differentiator

Problem solved

Functional benefit

Products and services

• Retinal Realities Podcast Podcast series featuring interviews with individuals living with visual impairments, healthcare professionals, advocates, and athletes. Episodes cover living with retinal conditions, assistive technology, employment advice, and personal empowerment stories, serving patients, families, and healthcare professionals across South Africa.
• Counselling and Patient Support Services Free personalised counselling and support services for patients with retinal conditions and their families, including emotional support, information sharing, and referral to service providers.
• Genetic Testing Facilitation Coordination of genetic testing and genetic counselling services for patients with inherited retinal disorders, working in partnership with the University of Cape Town, the National Health Laboratory Services, and international laboratories.
• Clinical Trial Enrolment Assistance in enrolling South African patients with retinal conditions in clinical trials, including facilitating connections with trial coordinators and registering patients in the My Retina Tracker patient registry.
• Youth Empowerment Program Programmes and resources designed for young people living with retinal conditions, including the Youth Edition of the Retinal Realities podcast, employment assistance, mentorship, and para-sport development opportunities.
• Technology Assistance Program Resources and guidance on assistive technology for people with low vision, including information on screen readers, magnification tools, smartphone apps, and other accessibility solutions.
• Educational Webinars Online seminars and educational presentations covering topics related to retinal conditions, research advances, assistive technology, and living with vision loss, delivered to patients and families.
• Annual Fundraising Events Programme Annual fundraising and awareness events including Bowls for Sight, Padel for Sight, Swing for Sight, and Dis-Chem Ride for Sight cycling events, combining community engagement with fundraising for sight-saving research and support services.
• NSFAS Education Support Referral Information and referral services helping students with visual impairments access the National Student Financial Aid Scheme (NSFAS) benefits, including the increased income threshold for students with disabilities.

Quantifiable outcome

• 35% increase in Dis-Chem Ride for Sight participation compared to previous year, achieving highest turnout since COVID
• +2 more outcomes

Named customers5 records

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Eleven partnerships are on record, tiered core and minor.

• Roche Products South AfricacoreGTM or Marketing Partner · 1 June 2026Roche Products sponsors the Retinal Realities podcast series, supporting episodes on Helen Keller Month, AMD journeys, World Optometry Day, and various youth and advocacy content. Multiple podcast episodes acknowledge Roche's generous contribution.
• Helen Keller Society of South AfricaminorStrategic or Co-development Partner · 1 June 2026Podcast collaboration featuring Bev Richardson from the Helen Keller Society in Pinelands, Cape Town. Society provides inclusive retirement accommodation and low vision services for approximately 120 residents, 60% visually impaired.
• South African Optometric AssociationcoreStrategic or Co-development Partner · 23 March 2026Collaboration for World Retina Week and World Optometry Day initiatives. Joint press release on myopia in children with Retina South Africa CEO Manny Moodley and SAOA CEO Harry Rosen. Shared advocacy for regular eye examinations and early intervention.
• Woolworths South AfricacoreChannel Partner/ Reseller/ Distributor · 23 July 2025Woolworths MyDifference loyalty programme allows shoppers to select Retina South Africa as their beneficiary. Shoppers download the app, activate their virtual card, select Retina SA, and shop as usual. Every purchase helps fund sight-saving research and support services. The MySchool card has been replaced by the new virtual MyDifference card.
• World Health Organization (WHO)coreStrategic or Co-development Partner · 12 June 2025Retina South Africa Deputy Chair Mariza Jurgens serves on WHO's Technical Advisory Group (TAG) for assistive technology. Participated in Geneva review of Priority Assistive Products List (APL). Stakeholder engagement sessions hosted for African region consultation.
• National Council for the Blind (SANCB)coreStrategic or Co-development Partner · 1 May 2025Retina SA is a member of SANCB. Collaboration on Beyond Sight exhibition showcasing assistive technology. Support for education initiatives including Braille Cup and Winter School for visually impaired learners.
• Johannesburg Society for the BlindminorStrategic or Co-development Partner · 18 July 2024Mandela Day food drive partnership. Retina South Africa collected non-perishable food items from members and building tenants to support the Johannesburg Society for the Blind, addressing food scarcity faced by the society.
• South African Department of TransportminorGTM or Marketing Partner · 30 May 2024Retina South Africa represented at Transport Summit on Universal Accessibility by Mariza Jurgens, Claudette Medefindt, Sandy Cape, and Linsay Engelbrecht. Participated in drafting the summit's aviation and airline communique.
• South African Guide Dog Association for the BlindminorStrategic or Co-development Partner · 29 April 2024Provides airport letters confirming guide dog status as Service Animal. Contact through Ronel Pretorius for arrangements. Supports visually impaired travellers with documentation for air travel.
• Foundation Fighting Blindness (USA)coreStrategic or Co-development Partner · 1 April 2017International partnership for the My Retina Tracker patient registry - a confidential database enabling researchers to identify patients with specific conditions for research projects. Also facilitates access to international clinical trials for South African patients.
• University of Cape TowncoreStrategic or Co-development Partner · 1 April 2017Partnership for genetic testing services. Testing is facilitated through the National Health Laboratory Services locally and international laboratories in partnership with UCT. Contact must be made via Retina South Africa for test arrangements. Some sponsorship available for needy families with young children affected by IRD.

Scale indicators4 records

Recent moves6 records

Expansion highlights7 records

Direct peers

• Foundation Fighting Blindness: US-based non-profit funding retinal-degeneration research and operating the My Retina Tracker patient registry, the same registry Retina SA plugs South African patients into. Direct international counterpart in inherited retinal disease advocacy.
• Fighting Blindness Ireland: Ireland-based patient-led charity funding research into retinal degeneration and supporting affected individuals. Closely comparable mission, structure, and patient-registry role to Retina SA.
• Retina International: Global umbrella of national retinal patient organizations; Claudette Medefindt serves on its board. Direct peer in patient-led advocacy for inherited and age-related retinal conditions.

Broad incumbents

• Royal National Institute of Blind People (RNIB): UK's largest charity for people with sight loss, covering all eye conditions and providing support, advocacy, and accessible services. A broader incumbent operating at much larger scale in an adjacent space.
• Prevent Blindness: US-based voluntary health organization focused on eye disease prevention, early detection, and patient support across many eye conditions. Shares the advocacy-and-education mission at much larger scale.
• American Foundation for the Blind: US national non-profit addressing the full spectrum of blindness and visual impairment through advocacy, research, and services. Comparable patient-advocacy function but at significantly larger scale and broader scope.
• CBM (Christian Blind Mission): International disability-focused INGO working on prevention of blindness and inclusion of people with disabilities in low- and middle-income countries. Comparable in mission footprint in Africa and emerging markets.

Emerging players

• MD Support: Patient-focused information and support resource for people with macular degeneration and similar retinal conditions. Smaller patient-led advocacy model with significant thematic overlap on retinal degenerative disease.

Regional players

• National Council for the Blind (SANCB): South Africa's umbrella body for the blind and visually impaired; Retina SA is a member organization. Operates in the same geography on a broader blind/visually-impaired mandate, providing context for competitive positioning.
• Helen Keller Society of South Africa: South African society providing inclusive retirement and low-vision services to roughly 120 residents (~60% visually impaired). Direct South African peer serving an overlapping visually-impaired constituency, featured on Retina SA's podcast.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/retina_sa
• Facebookfacebook.com/retinasouthafrica
• LinkedInlinkedin.com/company/retina-sa

Revenue estimate

Valuation estimate

Number of profiles

Profiles16 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

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

Frequently asked questions about Retina South Africa