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Emergency Care Consortium

$383,163 2021 FT2021-003

Emergency Care Consortium

The Emergency Care Consortium will provide a global emergency and urgent care hotline. The hotline will be free of charge, available 24-hours a day and seven days a week, and will enable provider-to-provider consultations to manage urgent issues with the appropriate standards directly related to Angelman syndrome, especially seizures. More than 90% of individuals with Angelman syndrome experience seizures which are often difficult to control with traditional seizure medications. The Emergency Care Consortium will be available for provider-to-provider use in July 2021, with clinical experts that truly understand the nuances unique to Angelman syndrome.

Principle Investigator

Jessica Duis, MD, Srishti Nanjia, MD, Elizabeth Berry-Kravis, MD, PhD