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Spreading Awareness of Bohring-Opitz Syndrome - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight
Spreading Awareness of Bohring-Opitz Syndrome - Ultra-Rare Syndrome Celebrates Its Day in the Spotlight

For Immediate Release

Spreading Awareness of Bohring-Opitz Syndrome

Ultra-Rare Syndrome Celebrates Its Day in the Spotlight

This year marks the fifth annual Bohring-Opitz Syndrome (BOS) Awareness Day.  On April 6th, people from around the world will shine the spotlight on this rare disorder by wearing denim and gold, and engaging in other awareness events and activities.

BOS Foundation Funds ASXL1 Research
BOS Foundation Funds ASXL1 Research
BOS Foundation Launches Financial Scholarship Program February 1, 2019
BOS Foundation Launches Financial Scholarship Program February 1, 2019
Monday Meet the Board- Lori Fulton
Monday Meet the Board- Lori Fulton
Yankee Candle & Ornament Fundraisers
Yankee Candle & Ornament Fundraisers
Monday Meet the Board- Tony Nguyen
Monday Meet the Board- Tony Nguyen
Monday Meet the Board- Taylor Gurganus
Monday Meet the Board- Anita Ross
Monday Meet the Board- Anita Ross
2019 BOS Family Meet-Up Back in Philly
2019 BOS Family Meet-Up Back in Philly
3rd Annual BOS Family Meet-Up
3rd Annual BOS Family Meet-Up
2018 BOS Meet-Up Travel Stipend Application
2018 BOS Meet-Up Travel Stipend Application
Discussing the Inheritance Pattern for Bohring-Opitz Syndrome
Discussing the Inheritance Pattern for Bohring-Opitz Syndrome
BOS Family Meet-Up 2018
BOS Family Meet-Up 2018

Join us for the third annual Bohring-Opitz Syndrome Family Meet-Up!

Celebrate BOS Awareness Day in Your Community!
Celebrate BOS Awareness Day in Your Community!
Family Finding Answers After 57 Year Search for a Diagnosis
Announcing International Mini Meet-Up Grants
BOS Foundation Board Member Attends Global Genes RARE Patient Advocacy Summit
Information About Our Birthday Club
2nd Annual BOS Family Meet-Up in Philadelphia
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.

BOS & ASXL Related Disorders Registry
BOS & ASXL Related Disorders Registry
We Are #BOS Aware: Jill and Vaughan
Spotlight on BOS Foundation Co-Founder, Taylor Gurganus
Trinity Lutheran School in Orlando Raises Money for Bohring-Opitz Syndrome
Fundraiser for Vinny Boy and BOS Foundation
Welcome to the Board!
Bohring-Opitz Syndrome Foundation: 2016 Year in Review
Bohring-Opitz Syndrome Highlighted at ACMG
Awareness Day Is April 6th: What Can I Do?
Ultra-Rare Syndrome Celebrates Its Day in the Spotlight
Ultra-Rare Syndrome Celebrates Its Day in the Spotlight
BOS Advocates Participate in Rare Disease Events