x-linked inheritance
X-linked inheritance means that the faulty gene is located on the X chromosome, the larger of the two sex chromosomes.
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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.
Sirius clinical trial – Exon 13 mutation of USH2A
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.
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.
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.
Parents and Carer’s Peer Support Group
Are you a parent or carer of a child or young person living with an inherited retinal dystrophy?
Genetic counselling
Genetic counsellors are specially trained healthcare professionals with extensive scientific knowledge who spend time talking to families living with inherited conditions.
Information for employers
If you are considering employing someone with inherited sight loss, or have an employee recently been diagnosed with the condition, you will need to take steps to ensure that you treat them fairly and that they can work safely and effectively.
Edinburgh Local Peer Support Group
Saturday 11 April 2026, 11.00am - 1.00pm - In-person - Come and join Valerie and the group for our first meeting of 2026 when we return to the Festival Theatre, Edinburgh to hear from guest speaker Chloe Brotherton, PhD Student working with Dr Roly Megaw.
Glasgow Local Peer Support Group
Tuesday 17 March 2026, 3.00pm - 5.00pm - In-person - Following on from the Glasgow Sight Village event please come and join our new Glasgow Peer Support Group facilitator Sarah Speed at Costa Coffee for a social catch up.