Thought-Leadership Projects

Creation of Global Clinical Guidelines for Sanfilippo Syndrome

Cure Sanfilippo Foundation is leading the development the first-ever Global Clinical Guidelines for the management of Sanfilippo Syndrome in partnership with the Sanfilippo Children’s Foundation (Australia). Best-practice guidelines for clinical care are critical for...

Caregiver Preference Study for Sanfilippo Syndrome

Cure Sanfilippo Foundation is working to publish the first-ever Caregiver Preference Study for Sanfilippo Syndrome. It will include what parents consider “meaningful benefit,” as well as an exploratory staging tool.The aim of the Caregiver Preference Study is to help...