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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