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.
Elaney’s Story with Bohring-Opitz Syndrome, written by her mother when she first became acquainted with the BOS Support group 10 years ago. “Elaney’s life has been a long and winding road with many ups and downs, twists and turns.” A number of things have changed in that time, but with a view of today there is one that remains: “Now age 19, she is much the same as she has always been; forever our baby girl.”
Thank you, Gina, for sharing your story of Elaney with us today!
Today is Rare Disease Day. Today is 28 February, Rare Disease Day! The rarest day of the year, dedicated to raising awareness for people living with a rare disease. Bohring-Opitz Syndrome (BOS) is a ultra-rare condition with only a few handful of cases worldwide in the…Read More Keep reading