Awareness Bohring-Opitz Syndrome
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!
Today, April 6th is marked by a global community of patients and their families living with Bohring-Opitz Syndrome (BOS) and it represents BOS Awareness Day! We specifically use the word “marked” because using the words “celebrated” or “commemorated” could potentially stir up an entirely different set of issues. We’ve seen some parents write that Bohring-Opitz…
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On the occation of Rare Disease Day last year we published 29 #BOSFACTS. A year has past and these facts about Bohring-Opitz Syndrome are still up to date. The Rare Disease Day slogan is this year ‘With research, possibilities are limitless’. Let’s go for it! #BOSFACT 1 RARE Bohring-Opitz Syndrome is RARE – fewer than…
Read MoreOn April 6th, the day that the first support group for families and carers of children with Bohring-Opitz syndrome (BOS) is created, is BOS Awareness Day! On this day we honor all the children, born with Bohring-Opitz Syndrome, their families and friends as well as all the caregivers of these children. For this day we…
Read MoreGive a HIGH FIVE for BOHRING-OPITZ SYNDROME! We are excited to celebrate that the first Bohring-Opitz Syndrome (BOS) SUPPORT GROUP will be five years old on APRIL 6th, the international Bohring-Opitz Syndrome AWARENESS DAY! This initiative is creating a worldwide virtual high five chain in support of children with Bohring-Opitz Syndrome and their families…
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Bohring-Opitz Syndrome 