Bohring-Opitz Syndrome Patients (Responses)
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We often get asked "what is the approximate number of patients with BOS?". According to our MAB, a non-scientific guess would be 150-200 cases worldwide. A parent suggested a form that was public for everyone to keep track. We have listened and created the form below.
This public form was created to track the approximate number of patients with Bohring-Opitz Syndrome. Information provided on this form is shared to a public spreadsheet and on the BOS Foundation website for the sole purpose of tracking the approximate number of patients with BOS. Completion of this form/questions on the form is voluntary. The BOS Foundation is not responsible for information shared on the form.

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#
Child FIRST Name Only (ie. Sam)
Year Born (ie. 2015)
BOS Angel
State/ Country (ie. CA, USA)
Diagnosed
Year Diagnosed (ie. 2017)
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1Talynn2014NoNC, USAGenetic2015
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2Annessia2010NoOhio / USAGenetic2015
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3Lorelei 1996NoNorth Carolina, USAGenetic2014
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4Theodore2016NoIndiana USAGenetic2017
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5Alex2015NoWV, USAGenetic2016
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6Samantha2010NoUSA Genetic2018
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7Brandon1995NoCA, USAGenetic2017
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8Alister2017NoMA, USAGenetic2018
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9Brynt2018NoNJ,USAGenetic2018
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10Taya2016NoMO, USAGenetic2017
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11Gwenyth2014NoNJ/USAGenetic2018
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12Lennon 2014NoPA, USAGenetic2015
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13Rosemary1989NoPA, USAGenetic2015
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14Silvestre2014NoBuenos Aires, Argentina Genetic2016
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15Jamie 2009NoUKGenetic2013
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16Elena2017NoWA, USAGenetic2018
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17Kylee2011NoSC, USAGenetic2013
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18Christopher2015NoNV, USAClinical2016
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19Meghan1998NoUSAGenetic2016
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20Asher2015NoNY, USAGenetic2018
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21Izy2008NoIDGenetic2015
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22Lindsay1988NoMaryland, USAGenetic2018
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23Simão2013NoPortugalGenetic2017
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24Tristan2015NoCanadaGenetic2017
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25Stephanie 2012NoOREGON USA Genetic2015
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26Rosie1995NoUKGenetic2006
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27Kennedy2007NoNJ, USAGenetic, Clinical2012
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28Senni2007NoFinlandGenetic2017
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29Manon 2014NoFrance Genetic2015
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30Hadi1987NoCa./USAGenetic2018
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31Vaughan2012NoVirginia/USAGenetic2014
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32Alexander2016NoSouth-Holland, NetherlandsGenetic2017
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33Valentijn2016NoSouth-Holland, NetherlandsGenetic2017
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34Bailie2005NoAR, USAGenetic2018
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35Juan Esteban2010NoZipaquirá, ColombiaGenetic2016
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36Najda2010NoSlovenijaGenetic2014
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37Wyatt2010NoTexas USAGenetic2015
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38Zara2017NoCoesfeld, DeutchlandGenetic2018
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39Jill2014NoPA, USAGenetic2015
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40Evelyn2018NoTNGenetic2019
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41Molly2014NoNebraska USAGenetic2016
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42Prin2015NoBangkok, ThailandGenetic2016
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43Jacob2003NoPA, USAGenetic2013
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Benjamin2012NoUKGenetic2013
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