“Une étincelle pour Isaure… et la recherche génétique” is supported in its projects by a Scientific Council made up of doctors, geneticists and researchers specialised in neuropediatrics and rare genetic diseases at both national and international levels.

Together, they contribute to the development of the research program led by
“A spark for Isaure … and genetic research”.

Professeur Annemieke AARTSMA-RUS,

Professor of Translational Genetics, University Hospital Leiden (The Netherlands), Dutch Centre for RNA Therapy (DCRT)

Professor Annemieke Aartsma-Rus is Professor of Translational Genetics in the Department of Human Genetics at Leiden University Medical Center. She played an important role in the development of antisense-mediated exon skipping for Duchenne muscular dystrophy during her doctoral thesis (2000-2004) at the University Medical Center in Leiden (The Netherlands). In December 2007, she became the leader of the “DMD exon skip group”.

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Professor Stéphane AUVIN

Professor of Neuropediatrics, Robert Debré Hospital

Epileptologist and neurologist for children, Stéphane Auvin is Director of the Department of Pediatric Neurology at the Robert Debré University Hospital and also directs the epilepsy program which participates in the development of antiepileptic drugs and clinical trials.

Its clinical and research activities focus on pediatric epilepsy and its treatments. His research team is working on inflammation-epilepsy, the ketogenic diet, and anti-epileptic drugs in the developing brain.
President of the pediatric commission LICE (International League Against Epilepsy), Stéphane AUVIN also acts as associate editor for epilepsy.

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Ms Laurence BONNEL

Managing Director Romania, Neurology and Immunology BU, Merck Group

After a first part of her career as a DE Masseur-Kinesitherapeute, DO Osteopath and a Master of Science, Mrs Laurence BONNEL was forced to reorient herself following a car accident.
Graduated from the Grande Ecole EDHEC Business School program and then from the Global EDHEC MBA, she is building the second part of her career in the pharmaceutical world.

Commercial leader with more than 15 years of experience in the pharmaceutical field, Laurence Bonnel works in a wide range of therapeutic areas (Oncology, Neurology, Immunology, Endocrinology, CV …) from pre-launch to the maturity stages of the life cycle of the product.

Professor Claude GRISCELLI

Professor of Paediatrics and Medical Genetics Honorary Member

Former intern at Paris hospitals, assistant clinical director then professor at the University of Paris 5, Mr. Claude GRISCELLI created and directed the clinical unit of pediatric immunology and hematology and a research unit of INSERM, from 1972 to 1995, intended for the research and treatment of hereditary deficits of immunity. He was among the first to perform bone marrow transplants intended to correct severe anomalies of the immune system and initiated the first steps of gene therapy in these diseases.

With his team, he described the world’s first case of childhood AIDS and the passage of HIV from mother to child and the first patients infected with HIV by the anti-hemophilic factor were observed in the department he was leading.

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Professor Gaëtan LESCA

Professor of Genetics, Hôpital Femme Mère Enfant de Lyon

Gaëtan Lesca is PU-PH in medical genetics at the CHU de Lyon, specializing in neurogenetics.
He has contributed to the identification of several genes responsible for monogenic epilepsies as well as to the description of genotype-phenotype correlations.
In the diagnostic context, it participates in the transfer of knowledge to develop genetic tests available to epileptology and pediatric neurologists.

He contributed to the constitution of the EPIGENE network and to the definition of the panel of genes for monogenic epilepsies (PAGEM).
He is a reference biologist for the pre-indication “drug-resistant epilepsies with early onset” for the sequencing of the complete genome within the framework of the France Médecine Génomique 2025 plan.

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Professor Rima NABBOUT

Professor of Neuropediatrics, Imagine Institute, Necker Hospital

Professor in Pediatric Neurology at Paris Descartes University, doctor in Neuroscience at Pierre and Marie Curie University, Rima Nabbout is a specialist in childhood epilepsy.

Coordinator of the French center for rare epilepsies at the Necker Enfants Malades Hospital, she is also a founding member of the European Reference Network for Rare and Complex Epilepsies (ERN EPICARE).

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Mr. Frédéric REVAH


Originally a research associate at the Pasteur Institute, Frédéric Revah has more than 20 years of experience in the pharmaceutical and biotechnology industries, as well as in academic research.

Head of the Gene Therapy of the Nervous System and Neurochemistry departments at Sanofi from 1992 to 1998, Frédéric Revah then joined the biotech company Cerep as Scientific Director and Managing Director of its oncology subsidiary.

He then joined Sepal Pharma, an innovation company in the field of oncology, before joining the Genethon teams in 2010.

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