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
Community
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
The Bereaved Child
BOS Awareness Day 2026
Bohring-Opitz syndrome (ASXL1) is a rare neurodevelopmental disorder caused by a genetic mutation in the ASXL1 gene. It often involves severe developmental delays and distinct facial features, and due to medical complications, infant mortality is high. Only a few reach adulthood. Aside from the difficulties of raising a child with so…
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BOS Awareness: Inclusion, Advocacy, and Equity
What would it be if all our children were born healthy …. We love our children like any other and do everything to make their lives as livable and beautiful as possible. We really want to embrace every unique trait of our loved ones, while steering clear of using terms like “dysfunction,” “impairment,” or anything…
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We have stopped …
It certainly wouldn’t have escaped your notice… We have decided not use on the social medium platform ‘X’, formerly ‘Twitter’ anymore. In practice, we have stopped posting new tweets and responding to others. The existing tweets will remain accessible for information purposes. Moreover, in the news items on our website, the button to share the…
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Updated Screening Guidelines
A new publication was recently published by Patel et al. 2024 on two children with Bohring-Opitz Syndrome, who are diagnosed with liver cancer. These two, together with a previously known case, are now three individuals diagnosed with hepatoblastoma described in the medical literature. Hepatoblastoma is a very rare malignant liver cancer occurring in infants and…
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Bohring-Opitz Syndrome/ASXL1 