A new global alliance for Sanfilippo Syndrome

We are pleased to announce the establishment of the International Sanfilippo Syndrome Alliance (ISSA), a global collaboration of patient organizations dedicated to providing timely information to individuals with Sanfilippo syndrome and their families.

The founding members of ISSA consist of eleven foundations from ten different countries, which have jointly supported various initiatives, including co-funding research projects worldwide. Formalizing this alliance will strengthen our collective voice on Sanfilippo syndrome.

Key priorities include developing a patient-centered Sanfilippo disease registry, translating and disseminating essential resources: the Global Roadmap for Sanfilippo Syndrome Therapies and the Sanfilippo Syndrome Consensus Guidelines for Clinical Care.

For more information, please visit www.sanfilippoalliance.org

A new global alliance for Sanfilippo Syndrome