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Bohring-Opitz Syndrome Foundation, Inc. Bohring-Opitz Syndrome Foundation, Inc.

The Bohring-Opitz Syndrome Foundation, Inc. is dedicated to improving the lives for all families living with Bohring-Opitz Syndrome through research, medical care, awareness and advocacy. 

http://www.bos-foundation.org/

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Bohring-Opitz Syndrome Foundation, Inc. Bohring-Opitz Syndrome Foundation, Inc. | bos-foundation.org Reviews
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The Bohring-Opitz Syndrome Foundation, Inc. is dedicated to improving the lives for all families living with Bohring-Opitz Syndrome through research, medical care, awareness and advocacy. 
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1 who we are
2 board members
3 what we do
4 goals and objectives
5 awareness
6 fundraising
7 strategic alliance partnerships
8 the bos blog
9 bos newsletter
10 what is bos
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who we are,board members,what we do,goals and objectives,awareness,fundraising,strategic alliance partnerships,the bos blog,bos newsletter,what is bos,key features,bos patient stories,faqs,patient support,new to bos,birthday club,annual meet up,menu
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Bohring-Opitz Syndrome Foundation, Inc. Bohring-Opitz Syndrome Foundation, Inc. | bos-foundation.org Reviews

https://bos-foundation.org

The Bohring-Opitz Syndrome Foundation, Inc. is dedicated to improving the lives for all families living with Bohring-Opitz Syndrome through research, medical care, awareness and advocacy. 

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1

Bohring-Opitz Syndrome Foundation, Inc. Fundraising

http://bos-foundation.org/fundraising

Research and Medical Care. Orlando, FL 32856. The Best Life for All Families Living with BOS. Research and Medical Care. We have four main fundraisers each year. We start every year off with T-shirts! T-shirts go on sale the end of January and the last day to order is February 28 (Rare Disease Day). Your purchase will help the foundation work towards improving the quality of life for people affected by BOS. Jun 11, 2012. Jun 11, 2012. Jun 11, 2012. Jun 11, 2012. Jun 11, 2012. Jun 11, 2012.

2

Bohring-Opitz Syndrome Foundation, Inc. Goals and Objectives

http://bos-foundation.org/what-we-do

Research and Medical Care. Orlando, FL 32856. The Best Life for All Families Living with BOS. Research and Medical Care. The Best Life for All Families Living with BOS. Help families and patients affected by BOS through family assistance programs. Support research that increases the medical community’s knowledge about BOS and its best treatments. Teach and share knowledge about BOS, and its best practices and treatments. Increase a sense of community surrounding BOS. Jun 11, 2012. Jun 11, 2012.

3

Bohring-Opitz Syndrome Foundation, Inc. Awareness

http://bos-foundation.org/awareness

Research and Medical Care. Orlando, FL 32856. The Best Life for All Families Living with BOS. Research and Medical Care. Raising awareness is very important to helping ensure early and accurate diagnosis of Bohring-Opitz Syndrome. Our goals for 2017 are to attend the Rare Disease Week on Capitol Hill, Annual Clinic Genetics Meeting, Global Genes and NORD Summits, and particpate in Rare Rounds at local hospitals. Taylor Gurganus, Awareness Committee Chair. BOS Awareness Day- April 6. Dec 15, 2016. May 24,...

4

Bohring-Opitz Syndrome Foundation, Inc. Medical Articles

http://bos-foundation.org/medical-articles

Research and Medical Care. Orlando, FL 32856. The Best Life for All Families Living with BOS. Research and Medical Care. A parent with a new BOS diagnosis, or a family member trying to learn more about the disorder can be overwhelmed by the medical literature about BOS. The literature is written in medical jargon and may be hard to understand. We polled our medical advisors for their top selections on the best articles for those new to the syndrome. Here’s what they suggested:. Read the article here:.

5

Bohring-Opitz Syndrome Foundation, Inc. Strategic Alliance Partnerships

http://bos-foundation.org/partnerships

Research and Medical Care. Orlando, FL 32856. The Best Life for All Families Living with BOS. Research and Medical Care. Here is a list of our current partners:. This is example content. Double-click here and select a page to feature its content. Learn more. Jun 11, 2012. Jun 11, 2012. Jun 11, 2012. Jun 11, 2012. Jun 11, 2012. Jun 11, 2012. Find the BOS Foundation on The Mighty.

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Bohring-Opitz Syndrome Foundation – Talynn's Journey

https://talynnsjourney.com/bohring-opitz-syndrome.html

September 25, 2015. March 12, 2016. I am more than happy to announce that Bohring-Opitz Syndrome now has a foundation! Carrie (a BOS mom) and myself had been discussing starting a foundation, we knew it was going to be a lot of work but also knew it was something that BOS needed. With the help of our two additional board members (Sara and Gina) we were able to get the ball rolling. For more information on the foundation please click the link below: www.bos-foundation.org. Posted in: Mommy of BOS Blog.

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Bohring-Opitz Syndrome Foundation, Inc. Bohring-Opitz Syndrome Foundation, Inc.

Research and Medical Care. Orlando, FL 32856. Research and Medical Care. 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 initiatives, and parent/patient advocacy. Find out about our organization and goals for helping people who live with BOS. Ready to take the next step? Jun 11, 2012.

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