Usher Syndrome Ireland is a non-profit organization dedicated to meeting the needs of individuals affected by Usher syndrome in Ireland. Usher syndrome is a rare genetic disease characterized by a combination of hearing loss, sight loss (retinitis pigmentosa), and sometimes balance issues. It is the leading genetic cause of combined hearing and sight loss worldwide, with an estimated 400,000 people affected globally and approximately 260-350 individuals living with the condition in Ireland.

The mission of Usher Syndrome Ireland is to raise awareness and understanding of Usher syndrome, serve as a trusted source of information, and raise funds for scientific research towards finding a cure or treatment. The organization provides a range of resources, including information about Usher syndrome, support for newly diagnosed adults, children, and their parents, and information specifically designed for healthcare professionals. Usher Syndrome Ireland also supports research efforts aimed at understanding Usher syndrome better, such as patient registries and research news.

The organization offers various resources such as leaflets, a yellow sticker campaign, and a blog called Life with USH to help individuals navigate life with Usher syndrome. Additionally, Usher Syndrome Ireland hosts community events and initiatives to bring together individuals affected by the condition. By supporting Usher Syndrome Ireland, you can contribute to their important mission of bringing hope for sight and sound