About the Foundation: “Established in 2015, the Bohring-Opitz Syndrome (BOS) Foundation is dedicated to improving the lives of people affected by BOS through the establishment of a medical advisory board, awareness initiatives, and parent/patient advocacy. The foundation holds several fundraisers each year to facilitate birthday/sympathy gifts to individuals with Bohring-Opitz Syndrome who have joined their Birthday club. The Foundation also sends welcome baskets to patients who are newly diagnosed with Bohring-Opitz Syndrome. Furthermore, the foundation organizes an annual meet up event in the United States and attends summits and conferences to help promote medical awareness.”
The BOS Connection group, created by the BOS Foundation in March 2015 to support their activities in raising public awareness for Bohring-Opitz Syndrome. This group shares various information about the BOS Foundation and how you can share your story and photos on their social media sites.