From 21 to 27 September 2026, Retina South Africa joins patient and disability organisations around the world in observing World Retina Week, culminating in World Retina Day on Sunday, 27 September. This year’s focus in South Africa is Living Well with Sight Loss — a message of practical hope for anyone diagnosed with a progressive retinal condition.
A diagnosis of retinitis pigmentosa, age-related macular degeneration, Stargardt disease, Usher syndrome, diabetic retinopathy or another inherited or acquired retinal condition can feel like the end of independence. Retina South Africa’s message this week is that it is not. With the right information, peer support, assistive technology and, increasingly, medical treatment, people can continue to work, study, raise families and live full lives.
“A progressive retinal condition changes how you see the world. It does not have to take away your place in it,” says Claudette Medefindt, National Secretary and Head of Science at Retina South Africa. “There is support available today, and science is moving faster than many patients realise. Our job is to make sure no South African walks that journey alone.”
Hope that is arriving in the clinic
For decades, many retinal conditions were described as untreatable. That picture is changing. Gene-specific therapies, treatments designed to slow or halt further degeneration, and interventions that can restore useful central or peripheral vision in selected conditions are moving from research laboratories into clinical practice internationally.
Retina South Africa works with researchers at the University of Cape Town and with partners in Retina International to identify the genetic mutations that affect South African families, facilitate genetic testing, and help affected persons understand whether they may qualify for clinical trials or emerging therapies. Genetic testing is often the first practical step towards a future treatment.
The organisation is clear-eyed about access. Not every treatment is available in South Africa yet, and not every condition has a licensed therapy. That is why advocacy for local trials, fair pricing and public-sector access sits alongside day-to-day patient support.
Living well is not a slogan. It is a service.
Founded in 1980 as a patient and disability-led organisation, Retina South Africa remains the only registered non-profit in the country dedicated to people living with retinal disease. It serves all nine provinces, supports more than 3 000 members and volunteers, and offers counselling, education, referrals, disability-grant guidance and community programmes in several South African languages.
That work includes psychosocial support for newly diagnosed families; guidance on low-vision aids and workplace adjustments; para-sport programmes that rebuild confidence and fitness; and a digital workshop series, Living Well with Vision Loss, running through World Retina Week and Eye Care Awareness Month.
“Living well means knowing your rights, knowing your options, and knowing there is a community that understands,” says Mariza Jürgens, Vice Chairperson of Retina South Africa. “Sight loss is not a reason to step out of work, sport or public life. It is a reason to get the right tools and the right people around you.”
A call during World Retina Week
Retina South Africa is urging South Africans to:
- Book a comprehensive eye examination — retinal disease is often silent until vision is already changing [a charge will apply]
- This World Retina Week, Retina South Africa, Vision Works and the South African Optometric Association have joined forces to offer FREE retinal screening to all South Africans. The FREE retinal screening ends on 31 October 2026.
- Vision Works Optometrists also offer their Kids See FREE comprehensive eye test for children aged 6 to 12 yrs old. The “Kids See FREE” offer includes: FREE Eye Test , FREE Single Vision lenses, FREE Frame – from a select range
- To inquire:
Please email: [email protected] and find the Vision Works optometry practice closest to you, or call 0107450669.
Contact Retina South Africa: 011 450 1181 or email [email protected] for details of the nearest participating SAOA member.
- Register with Retina South Africa if you or a family member has a retinal condition, so you can be informed about support, genetic testing and trial opportunities.
- Talk to children and older relatives about sudden or gradual changes in night vision, central vision or side vision, and seek specialist care promptly.
- Support research and patient services that make both treatment and daily living possible.
World Retina Day is coordinated globally by Retina International, of which Retina South Africa is a founding member. Locally, the week also opens Eye Care Awareness Month.
