Providing information about Bohring-Opitz Syndrome and awareness through a worldwide exchange with guidance and parental support.

This awareness and advocacy page has been created by parents of children with Bohring-Opitz Syndrome who belong to the international private Facebook Group, called “Bohring-Opitz Syndrome support group”, that was started April 6th 2011. We now bring our knowledge and experience as parents and caregivers of BOS children forward in hopes to provide the most current resources available to new families of children with this disease.

Bohring-Opitz Parent Support Group

Bohring-Opitz Syndrome/ASXL1


The various goals of this website are to:

  • To connect families of children with Bohring-Opitz Syndrome
  • Provide and exchange numerous types of information among parents and caregivers,
  • To increase international awareness of Bohring-Opitz Syndrome,
  • To extend knowledge and informational resources to medical professionals who treat children with Bohring-Opitz, and
  • To encourage and promote continued research in order to improve the quality of life of our children.

Latest Posts

ASXL Puberty Survey

COMING SOON: PUBERTY SURVEY FOR ALL ASXL FAMILIES! Dr. Bianca Russell, a pediatric geneticist from UCLA, reached out to let us know about a new Puberty Survey for all ASXL families that will be launched soon. The UCLA ASXL Registry team is currently working on a new survey regarding puberty in children with ASXL conditions.…

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11 years ago in 2011

It’s 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! 11 years ago! 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…

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Rare Disease Day 2022

Just 11 days to go! Rare Disease Day is approaching. Join our Bohring-Opitz Syndrome Family with these frames for your social media profile picture and show your support on Rare Disease Day on February 28th 2022!

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Hola, amigos, fundación BOS de España

How amazing is that! The first foundation in Europe committed to advancing scientific research and to helping other families with Bohring-Opitz Syndrome. The initiators are Amaia’s parents, Juanfra López and Rosario Ruíz. Read more about their foundation and how you can help here: English below. ASALBO es fundada en marzo de 2021 gracias a la…

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