Usher Syndrome Type 1B is a genetic disorder that deprives children of their hearing and balance from the moment they are born. Their eyesight also quickly deteriorates until they become completely blind. Usher Syndrome is the most common cause of deaf-blindness, causing 50% of cases around the world.

Save Sight Now Europe’s goal is to find a cure for Retinitis Pigmentosa, the cause of blindness related to Usher Syndrome. We strive to reach a point where people living with Usher Syndrome Type 1B, a widely neglected community, don’t lose their sight, which is an essential sense to experiment and experience the world around them. We know that this is possible because successful treatments for other kinds of retina conditions have already been approved by the Food and Drug Administration (FDA).

We work closely with European and international inherited retinal disease organizations and research teams such as Institut de la Vision, IOB, Foundation Fighting Blindness, and Usher Syndrome organizations begining with our collegues in US Save Sight Now and patient organisations such as Usher Kids UK, Ava’s Voice, Usher Kids Australia, Usher Syndrome Ireland, Usher Syndroom, to generate community and build bridges to help cover the possible gaps.

Even though most of the research efforts we will be financing can benefit all three types of Usher, we will prioritize treatments for Usher Syndrome Type 1B, because it is the most severe and virulent form of this syndrome and is the type that affects our children.