We caught up with Lance Johnson, a podcaster and video editor, living with autosomal dominant retinitis pigmentosa (adRP). Since moving to New York City, Lance has started the See-Through Podcast, championing people from across the disability communi
Podcast about genetic testing for inherited retinal disease and how getting a genetic diagnosis empowers the IRD community. The guests are Kari Branham (genetic counsellor) and Ben Shaberman (Foundation Fighting Blindness).
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.