A new global approach to childhood dementia

https://www.childhooddementia.org/globalagenda Building global consensus: Why unified terminology matters for childhood dementia and all rare diseases January 2026 The Member Comment article below was shared with EURORDIS-Rare Diseases Europe by Kris Kusidlo, Chairman of our member organisation Sanfilippo Initiative, and Community Representative of the Global Childhood Dementia Consensus Project Steering Committee. https://www.eurordis.org/why-unified-terminology-matters-for-childhood-dementia/ Kris Kusidlo Joins Global Childhood Dementia Consensus Project Steering Committee Kris Kusidlo, Chairman of the EURORDIS member organisation Sanfilippo Initiative, has been appointed as a Community Representative on the Global Childhood Dementia Consensus Project Steering Committee. In this role, Kris is helping to lead a pioneering international initiative bringing together over 150 experts from across the globe to establish unified terminology and definitions for childhood dementia conditions. The project addresses critical fragmentation affecting more than 145 rare genetic disorders that cause progressive cognitive decline and collectively affect approximately one in 2,900 births. Today, EURORDIS has published Kris' Member Comment article on the Project and the importance of unified terminology for rare diseases. OUR GOAL IS TO FIND A CURE FOR DEVASTATING (SO FAR) FATAL INFANT DISEASE SANFILIPPO (MPSIII). https://sanfilippoinitiative.org/en/home/