Today is BOS day!

Good morning dear BOS Family, Today, April 6th is Bohring-Opitz Syndrome Awareness Day. This day was chosen because that’s the day that the Bohring-Opitz Syndrome support group was created on Facebook, on April 6th 2011! This group has helped so many families to connect all over the world! With this awareness day we want to encourages people…

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#RareDiseaseDay #29BOSFacts

On the occasion of Rare Disease Day we published 29 #BOSFACTS two years ago. Annother year has past and these facts about Bohring-Opitz Syndrome are still up to date. But there are important news for the Bohring-Opitz Family: Research on Bohring-Opitz Syndrome are still going on and more medical articles about Bohring-Opitz Syndrome are published.…

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Year of AЯRE

We would like to share you the amazing journey of the AЯRE Foundation. ASXL Rare Research Endowment (AЯRE) Foundation was launched in April to support research that will increase our understanding of the ASXL genes and to improve the treatment of individuals with congenital ASXL mutations, and it has been quite a year! These are…

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Asxl1 loss effects lung maturation

An important step towards a better understanding of the mechanism of ASXL1 mutation and Bohring-Opitz syndrome! Little is known about the role of an ASXL1 mutation in the organ development. “Recent studies using Asxl1-null mouse models indicated a critical role for Asxl1 in development. Depending on the model, Asxl1 loss causes embryonic lethality and developmental…

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BOS Meeting Point

Having support and community resources can help increase your confidence in managing Bohring-Opitz-Syndrome (BOS), enhance quality of life, and assist in meeting the needs of other family members. Parenting is often challenging, and parenting a child with a chronic condition like BOS can add additional stress to the day-to-day challenges. It’s important to remember you’re not…

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I am. We are. #BOSAware. Are we?

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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29 Facts about BOS

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…

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Today is BOS Awareness Day!

On 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…

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High 5 for BOS

Give 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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