WHY:
At Retina South Africa, we believe that everyone affected by inherited retinal conditions deserves access to cutting-edge treatment and the chance to protect their vision. Today, there is exciting news for our community — and particularly for families affected by Stargardt Disease Type 1. A promising new treatment is on the horizon, and we want our members to be ready.

HOW:
Belite Bio, a U.S.-based pharmaceutical company, is leading the Phase 3 DRAGON clinical trial for a drug called Tinlarebant. This daily capsule is designed to slow the build-up of lipofuscin, a toxic waste product that damages retinal cells in people with Stargardt Disease Type 1. During the 2-year study, young participants experienced no loss of vision and showed maintenance of healthy retinal tissue — a remarkable achievement.

Because of its potential impact, the U.S. FDA has granted Breakthrough Therapy Designation for Tinlarebant, meaning it will receive expedited review for registration. The trial is expected to conclude in December 2025, and if successful, the treatment could become available within just a few years.

To ensure that South African patients are eligible for this ground-breaking therapy, Retina South Africa, in partnership with the Department of Human Genetics at the University of Cape Town, is offering a once-off 40% discount on the cost of comprehensive retinal genetic testing — but only until August 2025.

WHAT YOU CAN DO:
If you are a member of Retina South Africa and believe you may have Stargardt Disease or another inherited retinal condition, now is the time to act:

🔹 Get tested: A total fee of R6000 will cover your DNA testing to help identify mutations in the ABCA4 gene(linked to Stargardt Disease) or other retinal-related genes.
🔹 This offer is open to adolescents aged 12–20 who may qualify for future treatments. If you’re 25 or older, we recommend discussing the relevance of genetic results with your eye specialist.
🔹 The testing uses a comprehensive retinal panel, so members with other conditions may also qualify — please confirm with us first.
🔹 You’ll also need to book a consultation with a genetic counsellor in your area (± R1600, often covered by medical aids).

✅ NEXT STEPS:

1. Email Denise at Denise@retinasa.org.za – she’ll refer you to a qualified genetic counsellor.
2. Once approved, she’ll email you an invoice for the R6000 genetic testing fee.
3. Pay the invoice, and you’ll receive a saliva sample kit.
4. Return your completed kit to Retina South Africa by mid-August 2025.

Let’s make sure our South African community is not left behind in this era of advancing treatments. Even if you’re not eligible for this trial, having your genetic diagnosis opens doors to future treatments, clinical trials, and personalised care.

We are here to help. 

For any questions or to confirm your eligibility, please reach out to us. Together, we can prepare for a brighter future.