The Usher Syndrome Contact Group is part of the Oogvereniging and offers a place to patients, partners, parents and children to meet each other and to share experiences.

    You can reach us through e-mail.


    The contact group organises Usher cafés throughout the country. An Usher café is an informal place where you can meet fellow-sufferers and share experiences with each other. Take a look at the agenda for the first next Usher café in your neighbourhood.


    The Usher Syndrome contact group believes that sharing experiences can be a source of inspiration for how to cope with Usher Syndrome. There are many possibilities to come into contact with each other and to share experiences, tips and advices.

    The contact group organises various activities in which making contact takes a central place. Here think of a national Usher day, but also of regional meetings or separate activities for adults, parents or young people. Apart from contact, information about medical and practical matters is offered as well. Do you want to help us organise various activities?