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Welcome to the DSF Family Network.

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 below to be a part of this family community and to stay up to date on new advocacy resources, clinical trials, and educational and fundraising events.

DSF moderates private support groups on Facebook for parents and caregivers of loved ones with Dravet syndrome. These are a great resource for families to ask questions and find support.

To join the support group, please follow these steps:

  1.  Fill out the form below to join the DSF Family Network and agree to the Terms of Use.
  2.  Request to join our Support Group on Facebook (you must have a Facebook account to proceed).
  3.  If you do not receive an approval notice on Facebook within 5 business days please send us a message. We may require additional information to process your request.

DSF moderates private support groups on Facebook for parents and caregivers of loved ones with Dravet syndrome. We limit membership in these support groups to parents and caregivers who are legally responsible for making medical decisions for the Dravet patient. These are a great resource for families to ask questions and find support. Other community members who are interested in learning more about Dravet syndrome, supporting our community of families, and staying up to date on events and research are encouraged to sign up for our mailing list.

DSF offers several programs for families who live in the U.S. and are registered in the DSF Family Network. To learn more or to register, click on the links below.

For families outside the U.S.: we suggest visiting our Resources Page to see if there is a Dravet syndrome organization in your country that may offer additional programs.

Newly Diagnosed Patient Kit  – Newly diagnosed families in the U.S. who register with the DSF Family Network will receive a Newly Diagnosed Patient Kit shipped to them. The kit includes DSF’s printed 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.  

Day of Dravet Workshops – Families across the U.S. can learn the latest in Dravet syndrome research and treatments, as well as connect with local Dravet families through regional break-out groups. 

DSF Birthday Buddies – Register your loved one with Dravet syndrome and the week of their birthday they will receive a birthday card and a small gift from DSF’s mascot, Aurora!

VIP Siblings Kit – These kits 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. 

Parent Resources Kit – Created based on research and inspiration from the community in conjunction with guidance from mental health experts, these kits offer tools for parents to help siblings navigate having a brother or sister with Dravet syndrome.

Caregiver Connect Grants – Caregiver Connect Grants are available from $100-$300 and can partially or fully fund a local Dravet family gathering or an ongoing Dravet support group in your area.

Patient Assistance Grants – The DSF Patient Assistance Grant program offers grants to patients with Dravet syndrome for necessary medical equipment, therapy devices, and educational aids.

DSF Family Network Registration

The information collected by Dravet Syndrome Foundation will not be sold or distributed outside of DSF and is used solely to verify the identity of and communicate with Family Network members as needed. The DSF Family Network is open to any parent, caregiver, sibling or extended family member who is interested in learning more about Dravet syndrome and supporting our community of families. Membership in the DSF moderated Parent and Caregiver Facebook support group is limited to parents and primary caregivers who are making medical decisions for their loved one with Dravet syndrome and are enrolled in the Family Network. Membership is contingent upon following the Group Rules as explained on the group’s page and agreement to our Social Media Terms of Use. Questions or concerns can be directed to our team.

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