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e-Newsletter September 2023
Our monthly e-Newsletter featuring the latest updates from Retina UK.
Meet our volunteers: Dr Katerina Tavoulari
Katerina joined the Retina UK team at the start of 2023 after hearing about the charity through her involvement in a research project at the University of Bath, where she works as an academic.
Webinar: Usher syndrome mini series – part two
Professor Mariya Moosajee looks at the latest research, clinical trials and treatment prospects for people affected by Usher’s syndrome.
e-Newsletter – April 2023
Our monthly e-Newsletter featuring the latest updates from Retina UK. Subscribe now to receive these updates directly to your email.
Meet our community: Bhavini Makwana
Bhavini was diagnosed with RP in 1997 aged 17. The consultant who confirmed her diagnosis told her that “there was no cure or treatment and she should prepare to go blind".
Meet our community: Mark Baxter
My name is Mark Baxter and from an early age I was diagnosed with a deteriorating retinal eye condition called retinitis pigmentosa or RP for short, which will slowly lead to blindness.
Graeme Ives: 6 marathons in the Sahara Desert for Retina UK
Graeme's son is living with retinitis pigmentosa and he has decided to take on an extreme challenge - running 250km across the Sahara Desert, with 6 stages, varying in length from 21km to 82 km, over 7 days.
Meet our volunteers: Joe Rizzo-Naudi
Our amazing volunteers are diverse in age, background and ethnicity. The one thing they have in common is that they are all living with, or directly affected by, an inherited sight loss condition.
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.