Copy
First quarter news from the BOS Foundation
View this email in your browser
BOS Awareness Day

Bohring-Opitz Syndrome Awareness Day is Wednesday, April 6.  Show your support by wearing gold and denim. Join our Facebook Event and share your photos using the #BOSawareness.  Want to know more about BOS Awareness Day? Click here
The Awareness Committee has distributed over 500 ribbons around the world to help raise awareness.
BOS Foundation Becomes NORD’s Newest Member

It is with great pleasure that we announce the acceptance of the Bohring-Opitz Syndrome Foundation into the National Organization of Rare Disorders (NORD). This shows the progress we have made in developing our Foundation into one that meets the criteria for becoming a member of NORD. We have successfully shown that we have a patient-centered focus, assisting families affected by Bohring-Opitz Syndrome diagnoses. Last year, we quickly achieved 501c3 tax-exempt status, thanks to the generous donors supporting the Foundation. We have also established a medical advisory board to help families understand the disorder and forge a link between families, the foundation, and the medical community.

Membership in NORD will give us many opportunities and advantages that will add value to the Bohring-Opitz Foundation. We will have expanded peer networking and guidance from a larger organization. The Foundation will also have access to breaking news relative to rare disorders. Additional promotion of the Bohring-Opitz Syndrome Foundation and Bohring-Opitz Syndrome will advance the awareness of the disorder. Our board and volunteers will have more opportunities for education and growing their knowledge in order to best help Bohring-Opitz Syndrome Foundation members. More information about NORD can be found at www.rarediseases.org.

Parental Support
Eight families affected by BOS were directly supported thanks to the generosity of our donors. Children who are ill or in the hospital are sent balloons or teddy bears and parents receive small gifts of encouragement. Thank you for your continued support! Donate today to help other families receive support items during difficult times.
Copyright © 2016 Bohring-Opitz Syndrome Foundation, Inc., All rights reserved.

www.bos-foundation.org

Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list
 






This email was sent to <<Email Address>>
why did I get this?    unsubscribe from this list    update subscription preferences
Bohring-Opitz Syndrome Foundation, Inc. · 1703 NW 42ND PL · Gainesville, FL 32605 · USA

Email Marketing Powered by MailChimp