Helpful resources
Caring for a loved one with Dravet syndrome can come with a lot of questions. These links and resources from the Dravet Syndrome Foundation (DSF) and other helpful sources may provide you with some answers for each step of your path moving forward.
Know where to begin after diagnosis
These resources explain everything you need to know about Dravet syndrome and the next steps after diagnosis.
See the DSF’s resources for families with a new diagnosis Download the DSF’s newly diagnosed guide
Find a care team
If you are looking for expert healthcare providers near you, these resources may help.
Locate an experienced neurologist See if you live near a comprehensive care center
Learn about managing seizures
Learn about the treatment guidelines for Dravet syndrome, as well as how to make a seizure action plan to help keep your loved one safe.
Get information about treatment Create a seizure action plan
Gather support
Gain support for yourself and your family by connecting with the DSF Family Network, and signing up for sibling resource kits made by the DSF and UCB.
Join the DSF Family Network and support groups Sign up to receive resource kits for supporting siblings and parents
Prepare for adulthood
Plan for your loved one’s transition from pediatric to adult care with the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder.
Get support and inspiration from other parents and caregivers from Shine Forward With Dravet