Charlotte Dravet

Charlotte Dravet passed away on 9 May 2025. Her name is known by all the people in the world who deal with epilepsy, at whatever professional level, and by many of the families in which there is someone with epilepsy. The fact that her name is so frequently pronounced because it is associated with an epilepsy syndrome she described and studied extensively is too little to account for the significance of her professionalism.

Charlotte developed her career in the Marseilles school of epileptologists, substantially contributing to the formulation of a new way of conceiving epilepsy as no longer as a simple disease of recurrent seizures but as a series of syndromes, with a coherent, often age-related pattern of manifestations with high specificity. This conceptual transition was crucial to initiate in-depth studies that have led eventually to the identification of specific aetiologies, and of which treatments are most appropriate and which to be avoided. This turning point was crucial in facilitating dedicated trials conducted on specific syndromes, a major step towards precision therapies and most recently gene-based therapies. Suffice it to say that Charlotte's dissertation gave rise to the publication that defined Lennox-Gastaut syndrome in 1966 and her meticulous description of the forms of epilepsy with myoclonic seizures led between 1978 and 1981 to define the phenotypic spectrum of benign myoclonic epilepsy in infancy and the severe myoclonic epilepsy that would later be named after her.

These contributions however, although of considerable importance to paediatric epileptology, are not enough to give the measure of her value as a doctor who dedicated her professional life to the care of young patients with severe and complex epilepsies. Charlotte's career was almost entirely spent at the Saint Paul centre in Marseille, an institution that under the leadership of its founder Henri Gastaut and of Joseph Roger was entirely devoted to receiving patients with epilepsy, especially children, both in short hospitalisations and as long-term residents. In the park of Saint Paul in addition to the several buildings devoted to these functions, there was also a home for a Resident Physician Doctor permanently available for complicated clinical situations. Charlotte, as a long-time Resident Physician, had direct knowledge of all aspects of the everyday life and troubles of people with severe epilepsies and their families, maintaining great lucidity in identifying the truly relevant needs for each specific individual. Her unparalleled capacity for clinical observation and central role in such a highly specialised centre have attracted for more than 40 years patients and eager young doctors from all over the world, animating an extraordinary cultural dynamism in an international atmosphere of hunger for knowledge.

There is no need to emphasise how scientifically productive this extraordinary combination of talent and cultural mix that gathered around the central figure of Charlotte was. Suffice to say as evidence of this special combination, to recall that from 1984 to 2019 six editions of the text Epileptic Syndromes in Infancy, Childhood and Adolescence, nicknamed Bleu Guide, were edited by Charlotte and co-workers. This text is a comprehensive international perspective that has sanctioned the classification of epilepsies from the 1980s to the new century and is still regarded as the written testimony of the transition to modern epileptology. Throughout all this, Charlotte played an ever-central role by organising international Workshops where hard clinical material was discussed, and caring for the many students and stagiaires from all over the world who came directly to her side to learn. Her contribution to medicine has earned her the ‘Légion d'Honneur’, the French highest order of merit reserved for only few people. For her commitment to both the scientific and “lay” worlds, she was awarded the title of “Ambassador for Epilepsy” by the ILAE and IBE in 1989; in 2004, she was awarded the “European Epileptology Prize” by the ILAE's Commission for European Affairs.

Her contribution to the knowledge of clinical epilepsy has been decisive in terms of its depth, breadth, and planetary spread, and has directly and indirectly been instrumental in fundamental shifts from generic approaches towards personalised medicine for epilepsy.

She will be sorely missed.

Renzo Guerrini (Italy), Bernardo Dalla Bernardina (United States)