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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.
We regularly make applications for grants to fund our information and support projects and have recently been successful in securing £12,000 from The National Lottery Community Fund.
The Retina UK community is sometimes targeted by adverts online or in social media, offering invasive treatments for inherited sight loss.
Did you join either of our Conferences this year? You can read about them inside this edition of Look Forward. We’ve had some fantastic feedback from our delegates so if you weren’t able to attend, you can watch or listen to the recordings from the day on our website.
Inside this edition, set yourself a challenge in 2024, plus find out about our brand new lottery.
Retina UK is delighted that the Scottish Medicines Consortium (SMC) has accepted the gene therapy Luxturna (voretigene neparvovec) for ongoing use by the NHS in Scotland.
Autosomal dominant inheritance means that the faulty gene is on an autosome (any chromosome other than the sex chromosomes) and that only one faulty copy is needed to cause sight loss.
A round-up of the latest research into inherited retinal conditions - February 2024.
Disulfiram (Antabuse), FDA-approved for deterring alcohol, is in a phase 1 trial at the University of Washington to improve vision in retinitis pigmentosa.
UK researchers have discovered that passing a weak electrical current between electrodes on a person’s scalp may lead to a reduction in frequency of the visual hallucinations experienced by some people living with sight loss.
