Retina UK publishes unique insight into the experiences of people with inherited retinal conditions

Retina UK logo

13 September 2019
Source: Retina UK

Evidence of the real-life experiences, challenges and expectations of almost 1,000 people affected by inherited sight loss conditions have been published by national sight loss charity Retina UK. The charity presented some of the key findings from its 2019 Sight Loss Survey when it was invited to represent its community during the recent NICE consultation for the gene therapy Voretigene

Read more Retina UK publishes unique insight into the experiences of people with inherited retinal conditions

BBC News: Gene therapy for rare eye disease set to be offered on NHS

4 September 2019
Source: BBC News

Patients with a rare inherited eye disorder are set to be able to access a new gene therapy on the NHS which slows down sight loss. Draft NICE guidance recommends the therapy (Luxturna) to treat inherited retinal dystrophies. The National Institute for Health and Care Excellence estimates just under 90 people in England will be eligible for the treatment. Drug

Read more BBC News: Gene therapy for rare eye disease set to be offered on NHS

Retina UK: Gene therapy for RPE65 gene approved for use in EU

23 November 2018
Source: Retina UK

The gene therapy Luxturna has won European regulatory approval for the treatment of Inherited retinal dystrophy caused by mutations in the RPE65 gene. This milestone decision was made by the European Medicines Agency (EMA) on Thursday, 22 November. Luxturna is the first and only gene therapy available in Europe to treat inherited retinal disease. It had already been approved for

Read more Retina UK: Gene therapy for RPE65 gene approved for use in EU

Fight for Sight response to the Spark Therapeutics price for Luxturna

4 January 2018
Source: Fight for sight

George McNamara, Director of Research, Policy and Innovation of Fight for Sight, the eye research charity, comments that: “Gene therapy is a novel technique which holds the potential to deliver new treatments for those living with sight loss. The approval of Luxturna in the US highlights the importance of ensuring that as more gene therapies come into effect here in

Read more Fight for Sight response to the Spark Therapeutics price for Luxturna

The Guardian: US drug firm offers cure for blindness – at $425,000 an eye. With comment from RP Fighting Blindness

4 January 2018

Spark Therapeutics says ‘responsible price’ for Luxturna gene therapy ensures access for patients with retinal defect. A drug whose inventors claim it can cure a rare form of blindness is to be one of the most expensive medicines ever sold at $850,000 (£630,000). Luxturna is injected directly into the eye to address the root cause of visual impairment by replacing

Read more The Guardian: US drug firm offers cure for blindness – at $425,000 an eye. With comment from RP Fighting Blindness

FDA approves Luxturna to treat patients with inherited retinal disease

21 December 2017
Source: FIght for Sight

The US Food and Drug Administration (FDA) has this week approved the first ever gene therapy treatment, Luxturna (Voretigene Neparvovec), for inherited retinal diseases (IRD).The gene therapy drug will be used as a treatment for patients with vision loss caused by RPE65 gene mutations. Mutations in the RPE65 gene are associated with two main types of IRDs – retinitis pigmentosa

Read more FDA approves Luxturna to treat patients with inherited retinal disease