Laura Steinbusch has a son, 5-year-old Enzo, who has been diagnosed with Leber congenital amaurosis 10, or LCA10. It has made Laura a patient advocate for this disease, and in this interview she explains how the diagnosis has changed her life.
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.
During a ProQR Expert Perspective call Dr. Girach (CMO at ProQR) discusses findings from an open label extension study of sepofarsen for LCA10 with Retinal Disease expert Dr. MacDonald (Prof Emer University of Alberta).
Podcast on how the patient's perspective can positively impact research from protocol development to clinical trials. Featuring Francesca (information specialist, living with Leber congenital amaurosis) and Laura (Fighting Blindness Ireland).
Podcast on accessible information during COVID-19 and the challenges that come with isolation. Both Molly (web accessibility consultant) and Rebecca (psychotherapist) live with Usher syndrome, a condition causing combined blindness and deafness.
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".