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



We start every year off with Annual T-shirts! The t-shirt fundraiser runs the month of February, ending on February 28 (Rare Disease Day). 

We end the year with our Annual BOS Ornaments! The ornament fundraiser starts after Thanksgiving and continues while supplies last. 

Every dollar donated to the BOS Foundation goes to improving the lives of those with BOS and their families. We have no paid staff and all officers and board members volunteer their time. 

The following are some (not all) of the things the BOS Foundation supports throughout the year:

  1. Patient Support Services including Welcome Packets, Birthday Club, and other patient and family support.
  2. Organize Annual BOS Family Meet-Up
  3. Spread awareness about BOS to the general public and medical community through such things as BOS Awareness Day, social media, newsletters, and attending advocacy/awareness events within the rare disease community
  4. Attending various summits and conference to help educate others about BOS and network with the rare disease community.

We are currently looking for fundraisers to help support the BOS Foundation.  If you have any ideas or interests please email