Sanfilippo Patient Registry (all types)

Hope and Treatment are knocking and the Sanfilippo Registry Project is answering!

To help move research at its fastest pace and ease the burden on families, this registry was developed.  This registry will centralize a comprehensive database of individuals with Sanfilippo Syndrome – ALL types.  It will allow researchers and companies to better understand the progression of the disease and provide a pool of candidates for pending clinical trials in ONE location accessible by MANY researchers and companies.  NOT controlled by any one institution or company.  Please click here to register your child today!