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© Stichting Ushersyndroom


Fotoboek: Beyond the Muted Darkness

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  • Grote uitdagingen in onderzoek naar Usher

    De droom van mensen met Ushersyndroom is dat onderzoekers op tijd een behandeling vinden om het doof én blind worden te stoppen. Ushersyndroom is niet op te lossen met 1 onderzoek of doorbraak.


Start zelf een actie!

Stichting Ushersyndroom will finance the start of the CRUSH study, a natural development study into Usher Syndrome. With this the basis can be laid for future trials. Patients can, with their own files at hand, register for the CRUSH database and so bear the responsibility for the solution and the unraveling of the disease that leads to deafblindness themselves. The CRUSH study fits in with the mission of Stichting Ushersyndroom: ‘A treatment for Usher Syndrome in 2025!’
Usher Syndrome
Usher Syndrome is a rare hereditary disease. Children suffering from Usher Syndrome are born deaf or hard of hearing and they will also develop a visual impairment from their teenage years. This starts with night-blindness and an ever narrowing field of vision, like looking through a straw. Usher Syndrome eventually leads to deafblindness. Sometimes imbalance problems are also involved. The diagnosis has a great impact on the perspective. There is no …