research Archives

Accroître l'accès aux essais cliniques et aux nouveaux traitements dans les DEE

Il s'agit d'un enregistrement du webinaire tenu le 29 avril 2024. Il s'agit d'une conversation sur un modèle d'essai clinique prometteur pour de nouveaux traitements contre l'épilepsie qui accélère l'accès à…

RECORDING – Advance Outcome Measures for Severely Affected Populations

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…

ENREGISTREMENT – ÉVALUATION DU STATUT ET DES OPPORTUNITÉS

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…

Que pouvez-VOUS faire pour aider à guérir les épilepsies ?

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…

L'ABC des essais cliniques, partie 2 – Ce que chaque famille de maladies rares devrait savoir

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…

L'ABC des essais cliniques, partie 1 – Les bases

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…

Curing the Epilepsies Part 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…

Curing the Epilepsies Part 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…