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The eye is a very complex organ. It has a lens at the front which focuses light on to a light sensitive tissue that lines the inside of the back of the eye – this tissue is called the retina.

In this article, we hear Colin's story and the reasons why he has hope for the future.

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Our monthly e-Newsletter featuring the latest updates from Retina UK.

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• Written

Many inherited sight loss conditions occur when cells in the retina, which is the light-sensitive region at the back of the eye, deteriorate in an unpredictable way. These conditions are often referred to as inherited retinal dystrophies.

Researchers from the University Hospital Tübingen in Germany recently announced that there were no signs of visual gains in an early-phase clinical trial of a PDE6A gene therapy for Retinitis Pigmentosa (RP).

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• Retinitis pigmentosa

Making yourself aware of the what you are entitled to, and understanding the diagnosis pathway for inherited sight loss, will put you in a stronger position to seek better support.

Catch up on our BBC Lifeline Appeal from November 2025.

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The aim of these pages is to increase the level of awareness and understanding of genetic testing and genetic counselling among people living with inherited retinal dystrophies, empowering them to make fully informed decisions about their lives, healthcare and family planning.

The cover of this edition celebrates the success of our amazing London Marathon team. Together they have raised more than £43,000.

• Look Forward
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Biotechnology company Kiora Pharmaceuticals has been given the go-ahead to start in-human testing of a novel “small molecule” treatment, known as KIO-301, for advanced vision loss in retinitis pigmentosa (RP). The phase 1b clinical trial will take place in Adelaide, Australia, and will begin enrolling participants towards the end of 2022.

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• Retinitis pigmentosa