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We can provide all the support your organisation needs to work with us; from ideas to practical support and materials. The Retina UK team will help your contribution be as fun and rewarding as possible.

As Luxturna reaches the clinic and other gene-specific therapies for inherited retinal disease get closer to the end of the development pipeline, it is becoming ever more important that affected families can access a genetic diagnosis, potentially opening up choices around treatment and clinical trial participation.

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Biotechnology company ProQR has announced that its clinical trials of sepofarsen for Leber congenital amaurosis type 10 and ultevursen for USH2A-mediated retinitis pigmentosa will be wound down with immediate effect.

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X-linked inheritance means that the faulty gene is located on the X chromosome, the larger of the two sex chromosomes.

Are you a parent or carer of a child or young person living with an inherited retinal dystrophy?

Prof Mariya Moosajee at Moorfields Eye Hospital has asked us to share the message below about the clinical trial she is running. This trial is for a treatment that targets a particular section of the USH2A gene.

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• Usher syndrome

Genetic counsellors are specially trained healthcare professionals with extensive scientific knowledge who spend time talking to families living with inherited conditions.

TPT and Sight Loss Councils: Cut it back campaign

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Genetic testing, usually via a blood sample, is used to try and identify which gene contains the fault that is causing an individual’s sight loss.

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