Meet our community: James Clarke
Aged 20, James was diagnosed with retinitis pigmentosa at a routine eye appointment in September 2015 and registered partially sighted, just prior to buying his first car and taking his driving test.
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Significantly worse vision found in female carriers of X-linked RP and Choroideremia
It was previously believed that female carriers of X-linked inherited retinal diseases (IRDs) like X-linked retinitis pigmentosa (RP and Choroideremia) remained unaffected by sight loss.
Genetic testing: an essential topic for discussion with the IRD community
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.
Grant from The National Lottery Community Fund
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.
Beware of online adverts about treatments
The Retina UK community is sometimes targeted by adverts online or in social media, offering invasive treatments for inherited sight loss.
Look Forward – Summer 2023 – Issue 180
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.
Look Forward – Spring 2024 – Issue 182
Inside this edition, set yourself a challenge in 2024, plus find out about our brand new lottery.
Gene therapy treatment Luxturna accepted for use in Scotland
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.
Antabuse moves into clinical trial for people with RP
Disulfiram (Antabuse), FDA-approved for deterring alcohol, is in a phase 1 trial at the University of Washington to improve vision in retinitis pigmentosa.
Brain stimulation may reduce hallucinations
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.