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World Sanfilippo Awareness Day happens every year on November 16th, and is about spreading awareness and sparking conversations globally about Sanfilippo Syndrome, a disease few have heard of.

This special day of Awareness is in honor of the children around the world living with Sanfilippo Syndrome today, and those who have passed away.  We also honor the families of these precious children.

Sanfilippo Syndrome is a rapidly degenerative and fatal disease in children causing severe dementia, loss of all skills, and death usually in the teen years. Currently there is no cure and no treatment options, but there is HOPE in promising research and clinical trials.


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