Bohring-Opitz Syndrome Foundation, Inc.
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HomeOur OrganizationWhat is BOSPatient SupportBOS Awareness ProductsGet Involved
Bohring-Opitz Syndrome Foundation, Inc.
"The Best Life for All Families Living with BOS”
Featured
Celebrate BOS Awareness Day in Your Community!
Mar 17, 2018
Celebrate BOS Awareness Day in Your Community!
Mar 17, 2018
Mar 17, 2018
Oct 17, 2017
Family Finding Answers After 57 Year Search for a Diagnosis
Oct 17, 2017
Oct 17, 2017
Oct 9, 2017
Announcing International Mini Meet-Up Grants
Oct 9, 2017
Oct 9, 2017
Oct 9, 2017
BOS Foundation Board Member Attends Global Genes RARE Patient Advocacy Summit
Oct 9, 2017
Oct 9, 2017
Sep 9, 2017
Information About Our Birthday Club
Sep 9, 2017
Sep 9, 2017
BOS Family Meet-Up Announcements
Aug 26, 2017
BOS Family Meet-Up Announcements
Aug 26, 2017

The BOS Foundation has some very exciting announcements about future Family Meet-Ups. Click to read more...

Aug 26, 2017
2nd Annual BOS Family Meet-Up in Philadelphia
Aug 19, 2017
2nd Annual BOS Family Meet-Up in Philadelphia
Aug 19, 2017

The BOS Foundation hosted the 2nd Annual BOS Family Meet-Up in Philadelphia on July 29th. Fourteen families were in attendance and all had a wonderful time of fellowship and networking with others in the BOS community. Click here to read more.

Aug 19, 2017
BOS & ASXL Related Disorders Registry
Aug 17, 2017
BOS & ASXL Related Disorders Registry
Aug 17, 2017
Aug 17, 2017
Aug 4, 2017
We Are #BOS Aware: Jill and Vaughan
Aug 4, 2017
Aug 4, 2017
Aug 4, 2017
Spotlight on BOS Foundation Co-Founder, Taylor Gurganus
Aug 4, 2017
Aug 4, 2017
Jul 29, 2017
Trinity Lutheran School in Orlando Raises Money for Bohring-Opitz Syndrome
Jul 29, 2017
Jul 29, 2017
Jul 27, 2017
Fundraiser for Vinny Boy and BOS Foundation
Jul 27, 2017
Jul 27, 2017
Jul 18, 2017
Welcome to the Board!
Jul 18, 2017
Jul 18, 2017
Apr 11, 2017
Bohring-Opitz Syndrome Foundation: 2016 Year in Review
Apr 11, 2017
Apr 11, 2017
Apr 10, 2017
Bohring-Opitz Syndrome Highlighted at ACMG
Apr 10, 2017
Apr 10, 2017
Apr 4, 2017
Awareness Day Is April 6th: What Can I Do?
Apr 4, 2017
Apr 4, 2017
Ultra-Rare Syndrome Celebrates Its Day in the Spotlight
Apr 3, 2017
Ultra-Rare Syndrome Celebrates Its Day in the Spotlight
Apr 3, 2017
Apr 3, 2017
Apr 2, 2017
BOS Advocates Participate in Rare Disease Events
Apr 2, 2017
Apr 2, 2017
Mar 30, 2017
2017 BOS Coloring Page
Mar 30, 2017
Mar 30, 2017
Mar 28, 2017
BOS Foundation Medical Advisory Board Welcomes Dr. Yang and Dr. Pierson
Mar 28, 2017
Mar 28, 2017
Feb 28, 2017
Rare Disease Day 2017
Feb 28, 2017
Feb 28, 2017
BOS Foundation Partners with RARE Science for Awareness Day
Feb 16, 2017
BOS Foundation Partners with RARE Science for Awareness Day
Feb 16, 2017
Feb 16, 2017
Feb 3, 2017
We're Partnering with The Mighty!
Feb 3, 2017
Feb 3, 2017
Feb 2, 2017
Child with BOS Featured in Beyond the Diagnosis Exhibit
Feb 2, 2017
Feb 2, 2017
Bohring-Opitz Syndrome Receives International Attention
Jan 31, 2017
Bohring-Opitz Syndrome Receives International Attention
Jan 31, 2017
Jan 31, 2017
Position Opening - Director of Fundraising
Jan 14, 2017
Position Opening - Director of Fundraising
Jan 14, 2017
Jan 14, 2017
BOS Awareness Day
Jan 11, 2017
BOS Awareness Day
Jan 11, 2017

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. 

Jan 11, 2017
The Hunsuckers met mice with BOS!
Nov 29, 2016
The Hunsuckers met mice with BOS!
Nov 29, 2016
Nov 29, 2016
BOS Holiday Ornament
Nov 25, 2016
BOS Holiday Ornament
Nov 25, 2016

Help support The BOS Foundation’s mission to spread awareness about Bohring-Opitz Syndrome among the medical community! For every $20 donation made before December 10, 2016, you will receive our BOS holiday ornament as a thank you for your contribution.  

Nov 25, 2016
Join Our Birthday Club
Nov 16, 2016
Join Our Birthday Club
Nov 16, 2016

Starting January 2017, we will be sending birthday gifts to every child with BOS who is registered with us. This new method will allow everyone with BOS to receive a gift. If you want your child to be added to the birthday list please complete this form.

Nov 16, 2016

Bohring-Opitz Syndrome Foundation, Inc.
P.O. Box 560475,
Orlando, FL 32856
info@bos-foundation.org
Hours

Established in 2015 by Carrie Hunsucker and Taylor Gurganus, The Bohring-Opitz Syndrome Foundation, Inc.- a 501c3 non-profit organization- is dedicated to improving the lives of people affected by BOS through the establishment of a medical advisory board, awareness iniatives, and parent/patient advocacy. 

Mailing Address:

PO BOX 1693, Elizabeth City, NC 27906

Email Address:

info@bos-foundation.org