Webinar: Influencing with Retina UK
The latest webinar from Retina UK.
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Every experience counts: Insights from our sight loss survey
A huge thank you to everyone who completed our 2025 sight loss survey. This year we received over 600 responses. It follows similar surveys in 2019 and 2022 which led directly to the introduction of our Unlock Genetics and Discover Wellbeing resources, as well as shaping our work with the professional community who support people with inherited sight loss.
ProQR announces suspension of LCA10 and USH2A clinical trials
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.
Learning from your experiences
Thank you to all those who completed our recent Sight Loss Survey – almost 700 of you took the time to share your experiences.
Look Forward – Autumn 2025 – Issue 187
Since the publication of this newsletter our founder and honorary president Lynda Cantor MBE has passed away. We are all deeply saddened by this news.
Complaints Policy
We always aim to provide a high standard of service to our community. If you are unhappy with any of our services it is important that you let us know.
Meet a Researcher: Stéphanie Cornelis and Mubeen Khan
The project aims to develop a cost effective method of examining the entire ABCA4 gene to look for variations that might cause disease.
Research update – ProQR
In February 2022, ProQR announced a disappointing outcome for their phase 2/3 trial of sepofarsen for Leber congenital amaurosis type 10 (LCA10).
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.