For parents seeking information & support


We’re Here For You

If you suspect your child has Sanfilippo Syndrome, if your child was recently diagnosed, or if Sanfilippo has been a part of your life for years, we are here for you.

Do you need information about Sanfilippo and current clinical trials? Are you wanting to help advocate and accelerate research to find a treatment or a cure? Are you looking for support? We’ve been in your shoes.

Connect with us:

By phone: (803) 413-0525
Via e-mail:

Multiple people monitor this e-mail account, so we’ll be sure to get you quickly in touch with the person you need.