Rare Disease Day 2015

Today is Rare Disease Day! The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Bohring-Opitz syndrome is a rare genetic condition. Up to date worldwide there are only 35 cases reported. When a child is diagnosed with this syndrome, parents are generally left in a stressful situation with numerous unanswered questions about the future prognosis of their child. This awareness and advocacy page has been created by parents of children with Bohring-Opitz Syndrome. We now bring our knowledge and experience as parents and caregivers of BOS children forward in hopes to provide the most current resources available to new families of children with this disease.