New Patients Description
Annual BOS Meet-Up
April 6, 2018
Bohring-Opitz Syndrome Awareness Day takes place on April 6th each year. Taylor Gurganus, co-founder of the BOS Foundation, organized the first BOS Awareness Day on April 6, 2015. April 6th was selected for BOS Awareness Day because it is the anniversary of the formation of the first BOS Support Group on Facebook. Click here to read more and find out how you can get involved!
The Birthday Club was established in January 2017! The birthday clubs allows BOS patients and angels to receive a gift to celebrate and honor their birthday. The gifts are sent out monthly (not necessarily on ones birthday). If you have signed up and your child's birthday has already passed, they will start receiving gifts the following year.
Connection FB Group
This private group was establish in March 2015 and created to provide collaboration, knowledge about medical research, and public awareness of Bohring-Opitz Syndrome. This group is associated with the Bohring-Opitz Syndrome Foundation, Inc. .
New to BOS
Has your child recently been diagnosed with BOS? If so, please complete the form below so we can touch base with you and send a special welcome gift. All information on this form will be kept confidential.
Here are some stories from BOS families. Sharing stories really help the BOS community raise awareness.
Would you like your child's story to be heard?
If so, please email firstname.lastname@example.org for more information.