Scroll
To Top
0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

*Important

The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


Bohring-Opitz Syndrome Foundation, Inc.


Address

1310 Egypt Road
P.O. BOX 832
Oaks, PA 19456 USA

Email Address

[email protected]

Description

The Bohring-Opitz Syndrome Foundation, Inc. is a 501c3 nonprofit organization dedicated to improving the lives of people affected by BOS through the establishment of medical advisory board, awareness initiatives, and parent/patient advocacy. Bohring-Opitz Syndrome is a rare genetic syndrome caused by a mutation in the ASXL 1 gene. Children with BOS can have feeding difficulties, recurring respiratory infections, sleep apnea, severe developmental delays, and brain abnormalities. The leading cause of death is respiratory infections.

Please Note

The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.