Elaney’s Story

Elaney’s Story with Bohring-Opitz Syndrome, written by her mother when she first became acquainted with the BOS Support group 10 years ago. “Elaney’s life has been a long and winding road with many ups and downs, twists and turns.” A number of things have changed in that time, but with a view of today there is one that remains: “Now age 19, she is much the same as she has always been; forever our baby girl.”
Thank you, Gina, for sharing your story of Elaney with us today!

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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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A boy from Libya

Nearly all medical publications about Bohring-Opitz Syndrome (BOS) come from Europe and the United States of America. This case report by Yousef Assaleh is from Libya and documents a boy with BOS. Although this patient did not have the physical BOS characteristics (upper limb deformities or radial dislocation, ulnar deviation of the hands, and prominent eyes…

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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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