BBC investigates unproven treatments for retinitis pigmentosa

This documentary highlights a really significant and concerning issue that impacts families living with rare diseases, including inherited sight loss, and Retina UK applauds the BBC for carrying out this revealing investigation. We believe the programme has the power to prevent others’ risking being harmed by unproven treatments.

We know that some people are so desperate for a treatment or cure that they are willing to travel around the world and spend thousands of pounds to visit clinics for wide ranging procedures that claim they can improve or even restore their vision. As the programme reveals, there is no evidence these procedures work and they can actually do harm.

We would urge anyone considering a therapy they find online, including on the unregulated clinicaltrials.gov, to discuss it with their regular ophthalmologist or GP before proceeding.

As a charity that supports people with retinitis pigmentosa (RP) and other inherited sight loss conditions, sadly we are aware there are many unproven treatments being advertised.

There is only one therapy available in the UK, specifically for people living with the genetic diagnosis of RPE65. More information about Luxturna.

There are currently no licensed therapies or treatments available for the majority of people living with inherited retinal dystophies, but researchers are making progress, and there are a number of genuine, well conducted clinical trials underway across the globe. Updates can be found in the Research News section of our website and in our regular newsletters.

Information and support for those living with inherited retinal conditions is available from our Helpline, on 0300 111 4000 or at Helpline@RetinaUK.org.uk

The BBC documentary can be found at https://www.bbc.co.uk/iplayer/episode/p0f8vnvm/blind-faith