Awareness Day

Why this 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 to learn more about Bohring-Opitz Syndrome to improve the lives of children and their families and caregivers living with this rare genetic condition.

Why this colours?

bos ribbon normaal kleine

Many children with Bohring-Opitz Syndrome are suffering from high myopia. Contrasting colours like blue and yellow are the best perceived colours.

Bohring-Opitz Syndrome is a rare genetic condition. Less than 60 cases are reported worldwide. Blue denim is the awareness colour for rare and genetic diseases.

Our children love shimmering objects like gold. And above all, our children are worth their weight in gold. The diamond is to honour all our children who became wings too early.

Anniversary

10 years ago on April 6th 2011 the first Bohring-Opitz support group were created! We are proud that parents and caregivers from all over the world come together to share important information on our Facebook forum. We are so thankful for 10 years parent to parent support!

We want to show our appreciation for the support we have received through the past 10 years and have made a time line of our incredible journey to show what we have achieved in the last 10 years.

Get involved

Download the communications materials, send in your photo, tell your story, join us on Social Media, mobilise your community, your company, your friends.

Help us to bring children living with BOS and their families and carers out of isolation and put them in the spotlight by wearing GOLD & BLUE DENIM on April 6th!

We are looking forward to see your way of support!

Hashtag

#BOS #BOSAWARE #BohringOpitz #ASXL1 #BOS10Years

Stay informed

If you want to keep up with the latest developments regarding to Bohring-Opitz Syndrome we offer a number of ways to do so. You can sign up to receive email and below you’ll find our social media channels so you can follow for regular updates.

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Bewaren
Bewaren

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