Research
Understanding ASOs & Informed Consent
Navigating emerging treatment options can feel overwhelming, especially when families are asked to make decisions about experimental or individualized therapies. In this educational webinar, DEEP and KCNT1 Epilepsy explore the…
Read MoreIncreasing Access to Clinical Trials and New Treatments Across the DEEs
This is a recording of the webinar held on April 29, 2024. This is a conversation about a promising clinical trial model for new epilepsy treatments that accelerates access to…
Read MoreWhy EEGs Matter and What They Can Reveal
This is the recording of the DEE-P webinar which was recorded on October 12, 2023. Have you ever wondered about is there was more we could learn from the EEG…
Read MoreUndiagnosed
This DEE-P Discussion was recorded on September 13, 2023. During this DEE-P Discussion, we explore the experience of having a child with an undiagnosed rare epilepsy disorder. We discuss different…
Read MoreRECORDING – 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…
Read MoreRECORDING – ASSESSING STATUS AND OPPORTUNITIES
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…
Read MoreWhat can YOU do to help cure the epilepsies?
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…
Read MoreHow Effective is Your Epilepsy Care?
We all want our kids to get the best care possible. But how effective has your child’s epilepsy care been? What can we do to improve outcomes? This conversation—with three…
Read MoreThe ABCs of Clinical Trials Part 2 – What Every Rare Disease Family Should Know
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…
Read MoreThe ABC’s of Clinical Trials Part 1 – The Basics
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…
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