ELC Member Organizations
Non-Member Collaborating Organizations
Initiatives
Infantile Spasms Awareness Week
Availability Description: Download the "ISAW Partner Toolkit" and get more information on the ISAN.Website: https://infantilespasms.org/raise-is-awareness/isaw/
Status: Ongoing
Contributing Organizations: Epilepsy Leadership Council; CURE Epilepsy ; Empowering Epilepsy; Epilepsy Foundation; Seizure Tracker; American Epilepsy Society ; American Epilepsy Society ; Dup 15q Alliance; Dravet Syndrome Foundation; Families SCN2A Foundation; TSC Alliance; TSC Alliance; TSC Alliance; Child Neurology Foundation; Child Neurology Foundation; Mallinckrodt; Zogenix; Upsher-Smith; Radius
Seizure Action Plans
Availability Description: Information about Seizurre Action Plans (SAP) and different version of SAP exists on the seizureactionplans.org webiste.Website: https://seizureactionplans.org/
Status: Ongoing
Contributing Organizations: Dravet Syndrome Foundation; LGS Foundation; TSC Alliance; Neurelis; Epilepsy Alliance America; Dravet Syndrome Foundation; Empowering Epilepsy
Preventing Epilepsy Deaths toolkit
Availability Description: The goal of the behavior change toolkit is to educate clinicians on how to talk with families and people living with epilepsy about addressing epilepsy mortality risk factors.Website: https://preventingepilepsydeaths.org/
Status: Ongoing
Contributing Organizations: American Epilepsy Society ; Danny Did Foundation; Epilepsy Foundation; Child Neurology Foundation
Interagency Collaborative to Accelerate Research on Epilepsy (ICARE)
Availability Description: NINDS leads this working group, with broad representation from the NIH, other Federal agencies, and the research and patient advocacy communities. Annual meetings provide a forum for sharing information about ongoing and planned epilepsy research activities, highlighting advances and discussing needs and opportunities, promoting increased collaboration toward common research goals, and analyzing research spending on the Epilepsy Research Benchmarks.Website: https://www.ninds.nih.gov/current-research/trans-agency-activities/icare-interagency-collaborative-advance-research-epilepsy
Status: Ongoing
Contributing Organizations: Veterans Health Administration Epilepsy Centers of Excellence ; CURE Epilepsy ; Epilepsy Foundation; TSC Alliance; American Epilepsy Society ; National Institute of Neurological Disorders and Stroke ; Centers for Disease Control and Prevention; Dravet Syndrome Foundation; Epilepsy Foundation