Having support and community resources can help increase your confidence in managing Bohring-Opitz-Syndrome (BOS), enhance quality of life, and assist in meeting the needs of other family members. Parenting is often challenging, and parenting a child with a chronic condition like BOS can add additional stress to the day-to-day challenges. If you are the parent or caregiver of a child with BOS, it might be helpful to talk with other parents who have a child with the same condition in our “Bohring-Opitz Support Group”.
Bohring-Opitz Syndrome is an ultra rare syndrome with worldwide less than 60 people diagnosed in medical articles. Of course much more children have been diagnosed with BOS by genetic testing in the recent years and we are a growing family. The “Map Children with BOS” in addition to our “Bohring-Opitz Support Group”, is an opportunity to find each other and maybe – one day that comes from meeting face-to-face.
These family stories are from families around the world whose children have been affected by Bohring-Opitz Syndrome. They are stories about partnering with doctors, finding helpful resources, and seeking answers… but mostly they are stories of persistence and strength and hope. We thank the families who have so generously shared their Family Stories. with us.
Would you like to share your own experience (also in your own language)? Please contact us at firstname.lastname@example.org.