URGENT – Press Release
FOR IMMEDIATE RELEASE
Hope in Sight: Retina South Africa Marks Major Milestones in the Fight Against Inherited Blindness
Rare LCA4 patient found and connected to care; Stargardt treatment advances toward FDA approval; new funding secured for rare LCA patients
JOHANNESBURG, 25 August 2026 — Retina South Africa, the country’s leading advocate for people living with inherited retinal conditions, today announced three major milestones in its nearly fifty-year mission to prevent and treat retinal blindness: the successful identification of a child with the ultra-rare LCA4 condition in time for sight-saving treatment, the advancement of a Stargardt disease treatment toward FDA approval, and new international funding to support South African patients with another rare form of Leber Congenital Amaurosis (LCA).
“After nearly fifty years of hope, we can finally say we found the one child we set out to find. This is proof that persistence, science and partnership can change a life.”
— Claudette Medefindt, Secretary & Head of Science Retina South Africa
Hope Found for a Child with LCA4
Each year, approximately 33 babies are born in South Africa with a form of Leber Congenital Amaurosis (LCA), a rare group of inherited retinal conditions. Only one or two of these children are born with LCA4, a particularly rare subtype that requires treatment before the age of four if sight is to be preserved.
Recognising the urgency of finding these children in time, Retina South Africa launched the Just One Child Project last year, an initiative aimed at identifying the one South African child with LCA4 who could benefit from timely treatment.
Retina South Africa has now confirmed that this child has been found. The organisation has connected the family with the appropriate international medical authorities and will continue to support them throughout the treatment process.
The organisation credits Costello Medical for providing the campaign materials that powered the Just One Child social media campaign, which was instrumental in the search.
Stargardt Treatment Moves Toward FDA Approval
A treatment for Stargardt disease, developed through clinical trials in which Retina South Africa participated, has advanced through the regulatory process in the United States and could receive FDA registration as early as February 2027.
Retina South Africa is in active negotiations to bring the treatment to South Africa once approved, and is preparing patients through genetic testing to ensure that all those who qualify will be able to access it locally.
New Support for Rare LCA Patients
Separately, European clinical trial organisers have agreed to fund travel for qualifying South African patients with another form of LCA to participate in international research. Retina South Africa says this support is a lifeline for patients with conditions too rare to attract commercial treatment investment.
Call to Action
Retina South Africa is calling on healthcare professionals, donors and patients to help ensure the country is ready as new treatments become available.
The organisation is urging ophthalmologists and optometrists to refer patients with inherited retinal conditions for early genetic testing, noting that early referral and treatment-readiness can be sight-saving.
Retina South Africa is also appealing to corporate partners, sponsors and donors to continue their support, as emerging treatments are not covered by medical aids and are not yet available in South African hospitals — a gap that is expected to persist given how rare many of these conditions are.
Patients and members who have not yet undergone genetic testing are encouraged to contact Retina South Africa to determine their eligibility for current and future treatments.
Acknowledgements
Retina South Africa thanks its partners for making these milestones possible, including the Chan Zuckerberg Initiative, whose funding has enabled the organisation to expand its capacity to serve patients with rare retinal conditions; the Optometric Association of South Africa, for its ongoing support of low-vision patients and best-corrected vision testing; and the Ophthalmological Society of South Africa, whose members’ participation made South Africa the top global recruitment site for the Stargardt clinical trials.
The organisation also thanks Bayer, Roche, Dis-Chem Foundation and Dis-Chem Pharmacies for their continued partnership in fundraising and events, and the many other partners who have supported its mission.
Media enquiries and interview requests:
Claudette Medefindt
National Secretary and Head of Science
Email: claudette@retinasa.org.za | Phone: 083 306 5262
Mariza Jurgens
Vice Chairperson
Email: mariza@retinasa.org.za
Issued by: Retina South Africa (NPO 003-184)
Email: headoffice@retinasa.org.za | Tel: 011 450 1181
