Family support group

Join this welcoming, safe, and friendly place and be able to participate and receive important treatment information. We, parents and caregivers from almost 50 countries, might not know all the answers, as you we are always looking to find the best way to improve the life of our child with Bohring-Opitz Syndrome (BOS). But – together we are not alone and we strive to help one another.

Our constantly growing international Support group, created on April 6th 2011 on Facebook, can look back on 10 years experience on parental support and can be found at the following link: Bohring-Opitz syndrome support group.

This private group offers medical knowledge, emotional support, and other information related to caring for a child with Bohring-Opitz syndrome.  We are very proud of the success of our group.  The dynamic exchange of information and questions between parents and caregivers can be a real break-through for the parents of BOS child.  We know that having a medically fragile and child with special needs can be emotionally challenging.  However, we also know that our children give us an abundance of rewarding moments that will never leave our hearts.  We are proud that parents and caregivers from all over the world come together to share important information on our Facebook group.