Current Programs Snapshot
Caregiver Resources
More than 75 webinars addressing distinct priorities of DEE caregivers archived in an online Resource Center along with links to articles, key research, and additional materials.
Family Support
Sessions dedicated to directly supporting caregivers and families through community chats and special session on topics including burnout, managing stress on marriage and other relationships, and a Dinner on DEE-P program supporting families during extended hospital stays.
Research
DEE-P partners have come together to form the highly productive effort to improve outcome measures through The Inchstone Project that reflect patient priorities and support meaningful participation in clinical trials; special ad-hoc surveys and data collection across DEEs to support advocacy and drug development efforts.
Advocacy
Actively empower families to advocate and work to amplify voice and priorities of DEE families through session with FDA, NIH, and members of Congress; advancing 1st National Plan for the Epilepsies through leadership in the Epilepsies Action Network
Sponsored by:
