Agenda
09.00 – 09.30
Opening statements
Chair: José Ángel Aibar, Presidente de la Fundación Síndrome de Dravet
Charlotte Dravet
Juan Carrión, Presidente de la Federación Española de Enfermedades Raras
Rocío Sánchez-Carpintero, miembro de la Junta Directiva de la Sociedad Española de Neurología Pediátrica
Antonio Gil-Nagel, miembro de la Junta Directiva de la Sociedad Española de Epilepsia
Pilar Tirado, Presidente de la Asociación Española de Pediatría
09.30 – 09.40
Introduction to the program
Ana Mingorance, Fundación Síndrome de Dravet
09.40 – 10.40
Evolution in the diagnostic of rare genetic epilepsies
Chair: Stéphane Auvin, INSERM France
How to diagnose Dravet syndrome
Charlotte Dravet
When Before genetics: clinical diagnosis of rare epilepsies
Rocío Sánchez Carpintero, Clínica Universidad de Navarra
The genetic revolution in rare epilepsies
Sara Álvarez, NIMGenetics
10.40 – 11.00
Coffee break
11.00 – 12.30
Treating seizures: symptomatic treatment of Dravet syndrome
Chair: Antonio Gil-Nagel, Hospital Ruber Internacional
Treatment decisions in pharmacoresistant epilepsy patients
Antonio Gil-Nagel, Hospital Ruber Internacional
The development of cannabidiol
Rocío Sánchez-Carpintero, Clínica Universidad de Navarra
The development of fenfluramine
Stéphane Auvin, INSERM France
The development of OV935
Ángel Aledo, Hospital Ruber Internacional
12.30 – 13.30
Networking lunch
13.30 – 15.45
Treating genes: disease-modifying treatment of Dravet syndrome
Chair: Rubén Hernández, Cima Universidad de Navarra
Targeting Nav1.1-interneurons to restore cognitive and network functions
Jorge Palop, Gladstone Institutes
Small-molecule modulation of Nav1.1 activity
Tau Benned-Jensen, Lundbeck
Gene therapy approaches for Dravet Syndrome
Rajvinder Karda, University College of London
Delivery of the entire SCN1A coding sequence using High-Capacity Adenoviral vectors for the treatment of Dravet Syndrome
Rubén Hernández, Cima Universidad de Navarra
Upregulating Endogenous SCN1A Expression Using a GABA-Selective AAV Vector-Based Approach
Jen Seda, Encoded Therapeutics
TANGO technology and its application to Dravet Syndrome: a novel approach to the cause of the disease
Javier Avendaño, Stoke Therapeutics
15.45 – 16.00
Coffee Break
16.00 – 16.20
Patient organizations as partners in drug development
Ana Mingorance, Fundación Síndrome de Dravet
16.20 – 17.00
Open discussions and closure
José Ángel Aibar, Fundación Síndrome de Dravet
Charlotte Dravet
Ana Mingorance, Fundación Síndrome de Dravet
Antonio Gil-Nagel, Hospital Ruber Internacional
Stéphane Auvin, INSERM France
Javier Avendaño, Stoke Therapeutics
Rubén Hernández, Cima Universidad de Navarra
With the scientific endorsement of:
Spanish Society of Neurology
Spanish Society of Paediatric Neurology
Spanish Society of Epilepsy