New to BOS
Has your child recently been diagnosed with BOS? If so, please complete the form below so our Parental Support Committee can touch base with you and send a special welcome gift. All information on this form will be kept confidential.
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 in 2018 . The same gift was sent in 2017 to all patients, the 2018 gift will be different than the 2017.
Annual BOS Meet-Up
The 2018 Annual BOS Meet-Up is scheduled for the California! More information will be coming at the beginning of 2018. Contact firstname.lastname@example.org if you would like to help or have questions.
BOS Awareness Day!
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!
BOS Connection Group
This private group was establish in March 2015 and created for knowledge, collaboration, medical research, and public awareness of Bohring-Opitz Syndrome. This group is associated with the Bohring-Opitz Syndrome Foundation, Inc. .
BOS Patient Stories
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 email@example.com for more information.