JORNADA Investigación en Enfermedades Genéticas Raras. Una Necesidad Social

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Lugar: Delegación Territorial de la ONCE en Valencia (Gran Vía Ramón y Cajal, 13)
Fecha de celebración: 25 de noviembre de 2013
Inscripción: Enviar correo electrónico a eventos@ciberer.es (indicando nombre, apellidos, institución y teléfono de contacto)

PROGRAMA:
10:00-10:15 Bienvenida
José M. Millán (Facultativo Unidad de Genética del Hospital U. La Fe)
Almudena Amaya (Presidenta de FEDER Comunidad Valenciana)

10:15-12:45 Sesión 1. Investigación Genética y Epidemiológica
Moderadora: Carmen Ayuso (Directora Científica IIS-Fundación Jiménez Díaz)

10:15-10:45 Biobancos. Javier García del Pozo (Jefe de Área ISCIII)

10:45-11:15 Registros. Oscar Zurriaga (Jefe del Registro de ER de la Comunidad Valenciana, Centro Superior de Investigación en Salud Pública-CSISP)

11.15-11:45 Investigación básica y genética. Francesc Palau (Director Científico CIBERER, Responsable del Programa de ER y Genéticas del Centro de Investigación Príncipe Felipe-CIPF)

11:45-12:15 Pausa Café

12:45-14:00 Sesión 2. Investigación Clínica. Los puntos de vista de los agentes
Moderador: Rafael Dal-Ré (Asesor científico, Programa de Investigación Clínica, Fundació Pasqual Maragall)

Ponentes:
• Juan J. Vilchez. Jefe del Servicio de Neurología, Hospital U. La Fe
• César Hernández. Director Departamento de Medicamentos de Uso Humano, Agencia Española del Medicamento y Productos Sanitarios
• Jordi Cruz Villalba. Miembro de la Junta directiva de FEDER
• Fernando Royo. VP International Government Affairs, Genzyme. Presidente de la Fundación Genzyme

14:00 Conclusiones y Despedida:
Alberto Durán. Vicepresidente, Fundación ONCE

JORNADA
Investigación en Enfermedades Genéticas Raras.
Una Necesidad Social

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