2019 BOS Family Meet-Up Back in Philly

Lori FultonOctober 27, 2018BOS Family Meet-Up, Meet-up, BOSComment

Discussing the Inheritance Pattern for Bohring-Opitz Syndrome

Taylor GurganusMay 3, 2018Bohring-Opitz Syndrome, BOS Comment

2nd Annual BOS Family Meet-Up in Philadelphia

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.

Guest UserAugust 19, 2017Bohring-Opitz Syndrome, BOS, BOS Family Meet-Up, Patient SupportComment

BOS & ASXL Related Disorders Registry

Guest UserAugust 17, 2017BOS, Patient Registry, Medical Advisory BoardComment

Awareness Day Is April 6th: What Can I Do?

Rare Disease, Bohring-Opitz SyndromeGuest UserApril 4, 2017BOS, Bohring-Opitz Syndrome, Raise Awareness, Rare Disease Comment

Ultra-Rare Syndrome Celebrates Its Day in the Spotlight

Rare Disease, Bohring-Opitz SyndromeTaylor GurganusApril 3, 2017BOS, Bohring-Opitz Syndrome, Medical Advisory Board, BOS Clinical FeaturesComment

BOS Advocates Participate in Rare Disease Events

Bohring-Opitz Syndrome, Rare Disease, AdvocacyGuest UserApril 2, 2017BOS, Bohring-Opitz Syndrome, Raise Awareness, Rare DiseaseComment

BOS Foundation Partners with RARE Science for Awareness Day

Bohring-Opitz Syndrome, Rare DiseaseGuest UserFebruary 16, 2017BOS, Bohring-Opitz Syndrome, Rare Disease, Raise AwarenessComment

We're Partnering with The Mighty!

Bohring-Opitz Syndrome, Rare DiseaseGuest UserFebruary 3, 2017BOS, Bohring-Opitz Syndrome, Raise Awareness, Rare DiseaseComment

Bohring-Opitz Syndrome Receives International Attention

Bohring-Opitz Syndrome, Rare DiseaseGuest UserJanuary 31, 2017BOS, Bohring-Opitz Syndrome, Raise Awareness, Rare DiseaseComment

Position Opening - Director of Fundraising

Bohring-Opitz SyndromeTaylor GurganusJanuary 14, 2017BOS, Bohring-Opitz Syndrome Comment

Welcome Dr. Wen-Hann Tan

Taylor GurganusDecember 9, 2015BOS, Bohring-Opitz Syndrome, Medical Advisory Board, Rare DiseaseComment

Raising awareness by public speaking!

Taylor GurganusNovember 9, 2015Bohring-Opitz Syndrome, Raise Awareness, BOS, Speaking, Special NeedsComment

CHOC Walk 2015 - Spreading Awareness

October NewsTaylor GurganusOctober 11, 2015Bohring-Opitz Syndrome, BOS, Raise Awareness, Special NeedsComment