April 6th is Bohring-Opitz Syndrome Awareness Day!
With this Awareness Day we want to encourages people to learn more about Bohring-Opitz Syndrome to improve the lives of children and their families and caregivers living with this rare genetic condition.
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.
It’s Bohring-Opitz Syndrome Awareness Day! This day was chosen because that’s the day that the Bohring-Opitz Syndrome support group was created on Facebook, on April 6th 2011! 11 years ago! This group has helped so many families to connect all over the world!…Read More Keep reading
Just 11 days to go! Rare Disease Day is approaching. Join our Bohring-Opitz Syndrome Family with these frames for your social media profile picture and show your support on Rare Disease Day on February 28th 2022! twb.nz/bohringopitzrarediseaseday2022 twb.nz/bohringopitzrarediseasedayRead More Keep reading
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