I cannot begin to tell you how impressed I was to see all that were involved in the BOS Awareness Day on April 6th. So many people from around the world were #BOSAWARE! Bohring-Opitz Syndrome is growing. The number of patients has doubled in size since Talynn was diagnosed in 2015. It is increasing every month. I truly believe it is because medical professionals, educators, and the general public are becoming #BOSAWARE!

Awareness is important, if it wasn’t so many diseases wouldn’t have Awareness Days! I am beyond grateful that Bohring-Opitz Syndrome has a day. This day is used to celebrate, remember, honor, and cherish all of the patients who have been diagnosed with Bohring-Opitz Syndrome. So thank you to everyone who participated this year and continue to advocate and raise awareness for our BOS patients!

For more information about Bohring-Opitz Syndrome please visit:



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