We are in negotiations to bring an USHER Type 2 clinical trial to South Africa. Sadly, we estimate that only 10% of eligible patients are registered with Retina South Africa. This exciting trial will use mRNA technology to edit out a section of the USH2A gene that contains the mutation. Are you a candidate?
Usher Syndrome is a genetic condition that causes profound or severe hearing loss from birth.
People with profound hearing loss and minimal speech are usually diagnosed as Usher type 1. Usher type 2 children have moderate to severe hearing loss, but this loss may respond to hearing assistive devices. These children usually have good speech but may have a lisp or slight speech impediment. There is a more rare Type 3.
All 3 types are linked to different genetic mutations. Unfortunately, the difference between them is not always understood and some children may be misdiagnosed as Type 1 when they are actually Type 2. A letter about this probable trial was sent to all the Usher Type 2 patients on our registry and if you did not receive one and suspect that you may be eligible for the trial, please contact us at firstname.lastname@example.org