Providing information about Bohring-Opitz Syndrome and awareness through a worldwide exchange with guidance and parental support.
Social networking across the world wide web has been the predominant source of educational and emotional support for parents and caregivers of children with Bohring-Opitz Syndrome. When a child is diagnosed with this syndrome, parents are generally left in a stressful situation with numerous unanswered questions about the future prognosis of their child.
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.
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.
Newsletter ASXL Registry
A new update from the ASXL registry is given this month! This registry has been created to collect information about Bohring-Opitz Syndrome and ASXL related disorders in order to achieve a better understanding of these rare conditions for patients, caregivers and medical professionals.…Read More Keep reading
Long awaited BOS publication
The long-awaited sequel to the latest publication by Bianca Russell and her team has been released: “Clinical findings in 39 individuals with Bohring–Opitz syndrome from a global patient-driven registry with implications for tumor surveillance and recurrence risk.” This follow-up to the publications in…Read More Keep reading
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…Read More Keep reading