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

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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2021 ASXL Family Conference – video

Presenters: Bianca Russell, MD (University of California Los Angeles) and Wen-Hann Tan, BMBS (Boston Children’s Hospital) Experts Bianca Russell, MD (University of California Los Angeles) and Wen-Hann Tan, BMBS (Boston Children’s Hospital) provide a research and clinical overview of Bohring-Opitz Syndrome for families. This session is part of the virtual 2021 ASXL Family Conference hosted…

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“We really aren’t different”

This episode of The Mental Health and Developmental Disabilities (MHDD) National Training Center features Campbell, a girl from Kentucky living with Bohring-Opitz syndrome. Michelle is her mother and caretaker and believes her time as an Occupational Therapist was what truly prepared her for the task of raising Campbell. The Mental Health and Developmental Disabilities (MHDD)…

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Retinal detachment to chronic self-injurious behavior

NEW PUBLICATION – We know that many of our children often poke and rub their eyes for no apparent reason. We parents suspect that it may help them to see more clearly (children with BOS are often severely near-sighted). Another theory is that eye poking is a sensory stimulation (creates light flashes) (when bored or…

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