Bohring-Opitz Syndrome Foundation, Inc.
"The Best Life for All Families Living with BOS"

Get Involved

How You Can Help

Become a Supporter

The BOS Foundation relies on the generosity of families, friends, and the community for support.  No gift is too small. Your gift will help us work towards improving the quality of life for people affected by BOS. All donations are tax-deductible to the full extent of the law. Receipts are emailed yearly. Please email if you need yours sooner.

Click the donate button below to pay via PayPal or mail a check payable to Bohring-Opitz Syndrome Foundation, Inc. 

Make a donation

Our organization has no paid staff and all officers and board members volunteer their time. We are always looking for assistance in various area. If you are interested in volunteering please email


Request Awareness Products

Would you like to help spread awareness about BOS in your community?

 Complete the form below to request BOS Awareness items! Awareness items are shipped monthly.  If you would like to request a bulk order for an event please email and we will do our best to meet your request. 

Request your awareness products

Sign-Up For Our Newsletters

We send quarterly newsletters to keep the public up-to-date on the latests news. We would love to share those items with you. Please sign-up for our newsletters today.

Sign-up for our newsletters

Join the BOS Registry 

Patients and families (including angels) with BOS or mutations in ASXL genes are enrolled in our study which is approved by the hospital ethics committees. Parents complete simple questionnaires online about their child’s medical history and may submit photographs as well as test results and notes from their physicians. The information is kept on a secure server. Identified information can only be accessed by the researchers in charge of the study. Deidentified content may be available to other researchers, members of the registry advisory board, and the study participants.

Click here to find out more and join the BOS Patient Registy

Amazon Smile 

Choose the Bohring-Opitz Syndrome Foundation as your Amazon Smiles Charity when shopping online. Amazon will donate a percentage of your purchase to the Foundation.

Click here to sign-up today!