The Importance of a Bohring-Opitz Syndrome Patient Registry

For patients, caregivers and medical professionals there is still inadequate knowledge and resources about causes, symptoms, quality of life and treatments for Bohring-Opitz Syndrome (BOS). A patient registry (PR) for collecting information about this rare condition is an opportunity to increase the knowledge about Bohring-Opitz Syndrome. The BOS Foundation has started to work together with…

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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…

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Happiness!

KULUUT What makes us happy, what gives us strength? Those are the questions Charlotte Driessen tries to get an answer with her documentary about Coen and his special family. Coen, this four years old little boy, comes from The Netherlands and has gotten the diagnosis Bohring-Opitz Syndrome in 2012. A diagnosis that raise much uncertainty and…

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