research Archives

Aumento del acceso a ensayos clínicos y nuevos tratamientos en las EDE

Esta es una grabación del seminario web celebrado el 29 de abril de 2024. Esta es una conversación sobre un modelo de ensayo clínico prometedor para nuevos tratamientos para la epilepsia que acelera el acceso a…

GRABACIÓN – Medidas anticipadas de resultados para las poblaciones gravemente afectadas

Building a Consortium to Advance Outcome Measures for Severely Affected Populations This is a recording of the second workshop, held November 11th 2021, focused on Building a Consortium to Advance…

REGISTRO – EVALUACIÓN DEL ESTADO Y OPORTUNIDADES

ASSESSING STATUS AND OPPORTUNITIES FOR DEVELOPING OUTCOME MEASURES FOR THE MOST SEVERELY AFFECTED POPULATIONS This is a recording of day one of the workshop, held November 4th 2021, and was…

¿Qué puedes hacer TÚ para ayudar a curar las epilepsias?

This is a recording of webinar which was held on October 20, 2021. This special session brought together the leaders from government, clinician-researchers, and advocates who devoted two years to…

El ABC de los ensayos clínicos, parte 2: lo que toda familia de enfermedades raras debe saber

This is a recording of the webinar “The ABC’s of Clinical Trials: Part 2 – What Every Rare Family Should Know,” which was held on October 21st, 2020. Our Caregiver…

El ABC de los ensayos clínicos, parte 1: conceptos básicos

This is a recording of the webinar “The ABC’s of Clinical Trials: Part 2 – Get Your Community Prepared,” which was held on September 14th, 2020. This webinar included a…

Curar las epilepsias Parte 2

This is a recording of the second webinar in this series—developed in conjunction with the the Epilepsy Leadership Council and the Rare Epilepsy Network—on Curing the Epilepsies, which was held…

Curar las epilepsias Parte 1

This is a recording of the webinar “Curing the Epilepsies: Part 1,” which was held on September 14th, 2020. This is a recording of the first webinar in this series—developed…