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.
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:…Read More Keep reading
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.…Read More Keep reading
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…Read More Keep reading