Established in 2023, ISSA represents the global Sanfilippo patient community. With 11 founding member organisations, collectively we strive to connect families, accelerate research and raise awareness about this devastating genetic condition in the hopes of finding solutions.  Together we are a united voice determined to solve Sanfilippo for every family today, and every family tomorrow.

ISSA brings together the global Sanfilippo community to collaborate on shared priorities, accelerate drug development, share resources and expertise, and drive improvements in diagnosis, clinical care and family support to benefit all individuals with Sanfilippo, no matter where they live.

Our founding members are from around the globe: Portugal, Italy, France, Australia, Switzerland, United States, Spain, Brazil, Poland and Germany. We are highly collaborative with each other, sharing knowledge and working in partnership to improve outcomes for individuals with Sanfilippo syndrome and their families.