At ProQR we are getting ready for Usher Syndrome Awareness Day 2021 on September 18th. On this important day and during the month of September we will join the Usher community in raising awareness for this condition.
The Netherlands boasts the most prominent patient organization for Usher syndrome. Part of their secret is the passion of the Board. We caught up with president Ivonne Bressers and the Board’s secretary Annouk van Nunen at Annouk’s home in Leiden.
Molly Watt (25) is becoming a household name in the world of accessibility in technology. She is a young, independent entrepreneur, living with Usher syndrome. Accessibility, she says, is “anything, but black and white".
At a glance, it’s hard to tell Maartje - mother of four - has Usher syndrome. Though she manages her life very well, it took her a long time to get to that point. “I have learned to be optimistic, but the somberness is always there."