Programs for our Patient Community

The heart of DSF is our patient community. We exist to push research forward in the field of Dravet syndrome and to offer support and advocacy for our patient families. To assure that our community never feels alone on this medical journey, we offer several free programs to connect and support our patient families. Click on each program below to learn more and sign up today!

DSF Family Network and Support Groups: The DSF Family Network is open to any parent/legal guardian or sibling that is interested in accessing our advocacy services and programs. Sign up to be a part of this patient family community and to stay up to date on new advocacy resources, clinical trials, and educational, and fundraising events.

Newly Diagnosed Kits: The kit includes our guide for newly diagnosed families, as well as a medication bag and other materials to assure that families new to this diagnosis have the tools and resources they need for their child’s care.  *At this time, kits are only available to families in the US, but an electronic version of the handbook is available here.  

DSF Birthday Buddies: Register your loved one with Dravet syndrome and around their birthday they will receive a birthday card and a small gift from DSF’s mascot, Aurora!  *At this time, our Birthday Buddies program is only available to families in the US.

VIP Sibling Kits & Parent Resources: The purpose of the kit is to remind siblings how important they are, and offer tools that can help calm and provide simple communication tools that let those around them know how they’re feeling. Two versions of the VIP Siblings Kit have been created, one for sibs ages 4-10 and one for ages 11-18.  *At this time, kits are only available to families in the US.

Caregiver Connect Grants: Caregiver Connect Grants are available from $100-$400 and can partially or fully fund a local Dravet family gathering or an ongoing Dravet suport group in your area.The goal of the grants is to allow our community members to connect and receive support from one another.  *At this time, Caregiver Connect grants are only available for events held within the US.

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