Meet Zeb from the Netherlands, a young man who lives with a very rare NR2F1 disease caused by a NR2F1 gene variant, Bosch-Boonstra-Schaaf optic atrophy syndrome, or BBSOAS. This is the first-ever interview of someone living with BBSOAS and he and his mom Mandy talk with Carlie Monnier, President of the NR2F1 Foundation.
He discusses everything from life with a rare syndrome to school, his interests and hobbies, goals, and at the end of the interview his father has a surprise for him. Don't miss this historic interview.