EBC endorses the White Paper, Building Coordinated Care Pathways for Rett Syndrome: A Call to Action in Europe, co-authored by Charles River Associates, Rett Syndrome Europe and Acadia Pharmaceuticals Inc. with a special foreword from MEP Tom Sokol, which is now available to the public! This marks an important step in advancing the conversation around improving care coordination for individuals living with Rett Syndrome.
The aim of this white paper is to shed light on the urgent challenges faced by individuals with Rett syndrome, their families and the healthcare systems that support them. It seeks to provide policymakers with clear evidence on how fragmented care pathways contribute to unequal access, delays in diagnosis, unnecessary costs and avoidable burdens on families. By examining these issues through the lens of Rett syndrome, the paper highlights broader lessons for rare disease care across Europe and proposes practical policy solutions to move from fragmented to coordinated care.