Sibling Support – Resources and Tools for DEE families

Siblings of those with rare epilepsies are often forced to grow up fast. They defer their needs to their medically complex siblings. They often demand less of their parents who are often overwhelmed with the care and chaos of life with a child who has a severe DEE (developmental and epileptic encephalopathy or rare epilepsy). No matter the age difference, siblings are often early and ongoing caregivers to their siblings. This can often come at a cost.

Over the last year, we have been been proud to work in partnership with a group of patient advocacy organizations and Zogenix to develop these resources for families.

This is DEE-P Connections webinar was recorded on July 19, 2021 and was planned in coordination with all panelists listed.

Below are the slides Laurie Bailey of Zogenix shared on this webinar.

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