SanfilippoLINK turns your experiences into an enduring legacy that is shaping the future of Sanfilippo Syndrome treatments and care.

Joining SanfilippoLINK provides a way to build a lasting legacy for your child and yourself. Be a part of this important research effort right from your own home. Your experiences and your child’s experiences, milestones, and challenges are deeply meaningful. And when shared through the secure and structured SanfilippoLINK Portal, your insights play a direct role in informing researchers and clinicians who are working to advance treatments and improve healthcare for everyone with Sanfilippo Syndrome.

By joining, families also have access to tools that allow you to track your individual symptoms over time, keep health information in one place, and stay informed about additional research opportunities.

Joining is simple. And with everyone who joins, our collective impact grows.

SanfilippoLINK Portal and Biobank comprise a global clinical research and patient-voice registry platform built specifically for the Sanfilippo syndrome community. It has been designed to fill the critical gaps in knowledge needed for the successful development of future treatments, with the aim of supporting the broad and continued access to those therapies for individuals with all forms of Sanfilippo (A, B, C, D). SanfilippoLINK was established and is managed by Cure Sanfilippo Foundation and collaborates with Sanfilippo patient organizations around the world to serve the global community.

SanfilippoLINK consists of two components:

• SanfilippoLINK Portal, a secure online research and patient registry. Here, participants (individuals affected by Sanfilippo, their caregivers and family members) can enter information about their health and experiences. Clinicians can also securely enter information into the Portal.
• SanfilippoLINK Biobank, a repository of biological samples from individuals affected by Sanfilippo and their family members. Biosamples and clinical information in the Portal will be linked by a unique identifier code to protect privacy.