Finding Experts on Rare Diseases: Usher Syndrome

A healthcare consulting firm working with a Pharma company approached Zintro for help on a project where Usher Syndrome (types I-III), its cures, treatments, and more were being researched. Usher Syndrome is a rare genetic disorder that can cause patients to lose their hearing, vision, and balance over time. It’s believed there are around 400,000 people with Usher Syndrome worldwide (Usher Syndrome Coalition). The firm wanted to speak with KOL’s that had been studying Usher Syndrome for over 15 years, worked with patients themselves, and had experience with clinical trials. Additionally, they wanted to speak with geneticists that had strong understandings of MYO7A and CDH23 genes.