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Caregiver Connect Modules

Dravet Syndrome Foundation (DSF) has long recognized the many needs within our community, particularly the burden of caregivers. It is a lot of work, mentally and physically. Our caregiver community frequently talks about feelings of isolation, depression about the diagnosis, and anxiety over what their child’s future looks like. On top of that they are overworked and exhausted in managing their child’s medical, educational, and emotional needs. They are left with little or no down time when they can relax, rest, or have fun.

In 2019 DSF launced Caregiver Connect – a multi-year collaboration between DSF and Greenwich Biosciences for caregivers and families. Caregiver Connect is a unique multi-faceted program with a focus on helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy who has complex lifelong medical needs. Caregiver Connect offers a variety of easily accessible programs and tools to connect caregivers and help them manage and cope with the ongoing demands and stress they face on a daily basis.

This program is part of our Caregiver Connect Program and is fully funded through a generous educational grant from   JazzPharma Logo FullColor

Meet the Families

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