Living with Bohring-Opitz Syndrome

Here at BOS headquarters and at our support group, we are often asked about the best ways to care for children with BOS. Because every BOS child is unique and we don’t really like the idea of giving out “instructions” but we have written this information document “Living with Bohring-Opitz Syndrome” to provide guidance to newly diagnosed families. This document is based on real-life experiences of BOS families and mainly on the recent article by Bianca Russell and colleagues (2015) and should always be used in conjunction with professional medical advice.

“Living with Bohring-Opitz Syndrome”