Main features of Bohring-Opitz Syndrome

Each child with Bohring-Opitz Syndrome is affected differently, but the physical appearance of children with Bohring-Opitz Syndrome is often alike and the clinical phenotype at birth is extremely similar. Not everyone will have all of these certain physical characteristics, but they may include features as described in these “Clinical Feature Cards” with the main features of Bohring-Opitz…

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Do you know that …?

#BOSFACT – 29 facts about Bohring-Opitz Syndrome from Bohring Opitz on Vimeo. 29 February 2016 marks the ninth international Rare Disease Day coordinated by EURORDIS. This year the theme is: PATIENT VOICE! Bohring-Opitz Syndrome (BOS) is a rare disease and we want to invite you to learn more about BOS. In February 2016 we presented 29 days,…

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Give a Face to a Syndrome

We, the Bohring-Opitz Syndrome Support Group, are supporting the FDNA (Facial Dysmorphology Novel Analysis) project ‘Face2Gene’. Bohring-Opitz Syndrome (BOS), which has with less than 60 children recognized in medical history, is a very rare genetic disorder and knowledge of BOS is still in its early stages. By supporting the groundbreaking Face2Gene project we want to be at the forefront of…

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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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Infographic

Bohring-Opitz Syndrome has his own infographic!By following the link https://bohring-opitz.org/bos-infographic/ you can download the infographic also as jpeg and in different languages. We thank all the parents and friends of the children with Bohring-Opitz syndrome by helping us to make the BOS infographic available in multiple languages!

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Risk of tumors in Bohring-Opitz Syndrome

Hilary Vernon referred (post filed under Part 04: CANCER on OMMBIDBLOG ) to the recently published study on Bohring-Opitz syndrome (BOS) by Bianca Russell and colleagues and pointed out the risk of Wilms tumor in patients with BOS. Read here the article.

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