FIRST: Contact Your Child’s Doctor
If you think your child might have Sanfilippo Syndrome, immediately contact your pediatrician to have an evaluation and discuss your concerns.
Because Sanfilippo is a rare disease, your pediatrician or family doctor may not have ever heard of it. You, like every parent, are your child’s best advocate. You have a right to seek the answers you need to help your loved one.
Download our one-page Fact Sheet about Sanfilippo to share with the doctor to discuss your concerns and request the proper screening for your child.
SECOND: Contact Us, We’re Here For You
We are a community, a family of Sanfilippo families. There’s nothing like connecting with another parent who has walked the same path and understands the challenges you face.
We’ll tell you all about Sanfilippo, where the research is, where things stand, and how to start raising awareness. And most importantly, we’ll support you. Please, do not hesitate to contact us.