Bohring-Opitz Syndrome (BOS) is a very rare congenital disorder. In 2015, there were only 43 diagnosed cases of children with this syndrome in the world (Russell, B. et al. 2015). Due to the rarity of BOS only a small amount of medical literature can be found on the internet, nearly all of which focuses on the symptoms and characteristics of the disease. With one exception, the latest article by Russell et al. 2015, there is to date no published information available that provides recommended treatment or medical management of this syndrome. However, geneticists in the United States and Europe continue to research this disease as more children are diagnosed.
The information we share here on this website “Bohring-Opitz syndrome – A worldwide exchange of information and awareness” is based on the below collected medical publications, links and experiences and knowledge from our private Facebook group “Bohring-Opitz syndrome support group”. We thank the children and their parents for participation by sharing their Family-stories.