Dravet Syndrome Conference 2019

From seizures to genes: how Dravet syndrome is changing the way we treat epilepsy

When and where: 26th of September in Madrid

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