Happy Holidays

The magic of Christmas never ends and it’s greatest of gifts are family and friends.

Wishing you a season of gladness, a season of cheer,
and to the top of it all, a healthy and wonderful year!

Merry Christmas & Happy New Year!

2 replies to Happy Holidays

yuki says:

December 22, 2018 at 12:28 pm

Thank you for the email. My son is 15 years old with BOS. We will also provide you any information you can find useful any time.Merry Cristmas &Happy new year from Osaka.Japan.

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1. Sünne says:
  
  December 22, 2018 at 1:04 pm
  
  Hello Yuki, thank you for your message. Do you know that we have the Parent Support group for Bohring-Opitz Syndrome Families on Facebook? You can find this welcoming place here: https://www.facebook.com/groups/Okketje.Bohring.Opitz.parent.support.group
  Please feel free to contact Bianca Russell and Wen-Hann Tan via the Bohring-Opitz Syndrome Patient Registry. Parents complete simple questionnaires online about their child’s medical history and may submit photographs as well as test results and notes from their physicians. You can contact them at ASXLRegistry@cchmc.org with questions and to enroll in this study. Participants will be updated about their data via a regular newsletter. We recommend also the ARRE Foundation (www.arrefoundation.org) because this foundation funds research on Bohring-Opitz Syndrome.
  Wish you and your family a Merry Christmas and a Happy New Year!
  
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