Bohring-Opitz Syndrome Foundation, Inc.
"The Best Life for All Families Living with BOS"


What’s Happening

BOS Foundation Partners with RARE Science for Awareness Day

Talynn, Lennon, Campbell and Hazel with their one-of-a-kind Rare Bears, including a few with their BOS birthday club cape

Talynn, Lennon, Campbell and Hazel with their one-of-a-kind Rare Bears, including a few with their BOS birthday club cape

We are excited to announce we have partnered with RARE Science to gift BOS children and angels with one-of-a-kind RARE Bears in time for BOS Awareness Day, April 6th.

Earlier this year, we announced the creation of the BOS birthday club which includes a gift for your child's RARE Bear.  Some of the children pictured above have already received their RARE Bear and birthday club cape with the BOS Awareness ribbon.

Our partnership with Rare Science launched this special gifting of RARE Bears to coincide with Awareness Day to help educate others about Bohring-Opitz Syndrome.  RARE Science initiated the RARE Bear program in August of 2015.  It has since grown to include over 700 RARE Bear Makers from around the world (they span 9 countries and 45 states in the US) that make up the RARE Bear Army.  

Each bear is carefully selected and matched with a child during their monthly Matching Day.  For March, they have selected our BOS community as one of their organizations to gift bears.  Instructions on how to participate are listed below.  If you have any questions, please contact us at

How to participate in the RARE Bear program:

  1. Click on the link here and print the form to complete.
  2. Email completed form to by March 5.
  3. Matching Day for Bears is March 19, so we anticipate you will receive your bear a week or so after.  Please view this video to learn more about this wonderful program.
  4. Send pictures of you child with their bear to Rare Science at by April 4th.  If your child has received a cape in their BOS birthday club gift, we encourage you to put that on the bear.
  5. Rare Science will help spread awareness of BOS with the help of your pictures on Awareness Day, April 6.

Rare Science will also put pictures on their website according to the details in the letter with the form.  They do not put any identifying information with pictures, so your child's privacy is respected.  Sharing the picture allows the crafter of the special, one-of-a-kind bear to see it found a special home.  For BOS Awareness Day, they will create a collage with the pictures you submit to post on social media along with information on Bohring-Opitz Syndrome in hopes to spread awareness.

Also, don't forget to sign up your child for the BOS Birthday Club if you haven't done so already.  We have included a very special gift for your Rare Bear.  Click on the link here to sign up today!

To learn more about the RARE Bear Army and RARE Science, please click here.