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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.
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.
Faye was part of #TeamRetinaUK in 2019. This is what she had to say in the run up to the race:
Whether you're an expert runner, or a rebel *with* a cause, there's no better experience than the London Marathon!
Fundraising for Retina UK means a lot to me - both my dad and my nephew have been affected by inherited sight-loss, and I've seen first-hand the incredible work this charity does.
This October, join Retina UK on Halloween weekend (28 and 29 October 2023) and face your fears by taking on a Halloween skydive at various airfields around the UK.
The Royal National Institute of Blind People (RNIB) have awarded Retina UK the Visibly Better Employer quality standard.
There are many ongoing clinical and laboratory studies around the world, exploring innovative approaches to treating inherited sight loss.
Pancake Day or Shrove Tuesday, which in 2025 falls on Tuesday 4 March, could be a great opportunity to fundraise for Retina UK, whilst having fun and eating lots of yummy pancakes!
Dan found out he had retinitis pigmentosa in February 2022, but he feels it has been “on cards for years”. He said he had “an inkling something was up but never did anything about it: a typical guy I guess!”
