Getting a referral
If you have a diagnosis of an inherited retinal condition, or you are a close relative of somebody living with one of these conditions, you are entitled to access testing and genetic counselling.
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Light sensing small molecule given green light
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.
Meira GTx announces positive data from phase clinical trial
Biotechnology company MeiraGTx has announced encouraging news from its phase 1/2 clinical trial of botaretigene sparoparvovec (previously known as AAV-RPGR), a gene therapy aimed at X-linked retinitis pigmentosa caused by faults in the RPGR gene.
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.
Joint statement on benefits and employment support
As a coalition of sight loss charities, we are calling on the Government to make the benefit system and employment support fit for purpose for blind and partially sighted people.
Optogenetics
The BBC covered a story on Monday 24 May about optogenetics partially restoring the sight of a man living with retinitis pigmentosa in France.
ProQR makes progress with potential treatment for LCA
Despite the challenges of the pandemic, researchers and pharmaceutical companies are still making progress towards delivering new treatments for inherited sight loss.
ProQR clinical trial for Leber’s Congenital Amourosis (LCA) 10
Biopharmaceutical company ProQR is conducting a Phase 2/3 clinical trial (Illuminate) to measure the safety and effectiveness of RNA therapy, Sepofarsen which aims to treat Leber's Congenital Amourosis (LCA) 10.
Meet a Researcher: Dr Nikolas Pontikos
Dr Nikolas Pontikos is a Senior Research Fellow at UCL Institute of Ophthalmology, and has been working on inherited retinal conditions for several years.
Meet our volunteers: Steve and Khadeja
Steve has been volunteering for Retina UK since its formation in 1976 and has been a part of the Helpline team since the early 1980s.. He remembers very well a caller named Khadeja, who called the Helpline multiple times, following her diagnosis with RP in 1999.