The Sanfilippo Children's Foundation and Connect MPS (www.connectmps.org) urge all families with children living with Sanfilippo Syndrome (also known as MPS III) to register their details and those of the patient (child).
Connect MPS Patient Registry is a centralised database that connects families, researchers, industry and all stakeholders in the MPS and ML community.
Such data will help the MPS community, medical community and other pharmaceutical companies to better understand the natural history and progression of this devastating condition. This valuable information may be used to inform the development of therapies to treat Sanfilippo Syndrome.
