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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. 

New to BOS Form


Birthday Club

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. 

Birthday Club Form


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 jesa@bos-foundation.org if you would like to help or have questions. 


Patient Resources

Click the link below to check out a list the BOS Foundation members have created to help patients with various medical needs. 

Resources


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. . 

Request to Join


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 taylor@bos-foundation.org for more information.