ARM Member Profiles

Dravet Syndrome Foundation Spain (FSD) was created in 2011 by a group of struggling parents decided to support other families affected and to fight the disease through research. Since then, multiple approaches to include the patient voice in research programs and policy development have been followed: disease awareness on different media (journals, radio, blogs, social channels…), launch of various surveys to caregivers for the development of strategies and formal studies, direct contact with physicians, medical centers, government agencies and international organizations for the search of patient service improvement, constant communication with DS scientists both from industry and academy to provide them with the patient’s point of view and contribute in the advance of research and therapy access, etc.