We want you to know you’re not alone. The mission of the Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families. We help you do that by addressing the challenges of living with Dravet syndrome through a variety of resources and support options, including:
- Information about Dravet syndrome including symptoms, diagnosis and treatment.
- Resources including brochures, educational webinars, and videos.
- Programs for families and siblings who also experience the effects of this diagnosis.
International Dravet Resources
Adult Transition Resources for Dravet
- Child Neurology Foundation
- Got Transition
- Dravet Syndrome in Adults Info Card
- Medical Guide to Transition of Care for Adults
- Medical Guide to Transition of Care for Adults (Spanish)
- Creating a Long Term Care Plan
- Developing a Lifelong Support Network
- Transitioning from School to Adulthood Planning Guide
- Epilepsy Transition Medical History Form
Educational Resources for Dravet
- Safety & Dravet Syndrome
- Individualized Educational Plans (IEP)
- DSF Family Brochure
- DSF Family Brochure (Spanish)
- Could it be Dravet? – for HCPs
- Could it be Dravet? – for HCPs (Spanish)
- Seizure Safety & Mortality Brochure
- Seizure Safety Brochure (Spanish)
- Patient Safety & Accommodations in Educational Setttings
- Patient Safety & Accommodations in Educational Settings (Spanish)
Additional Resources
- Angel Flights East
- Angel Flights NE
- CareGiving.com
- Courageous Parents Network
- Danny Did (SUDEP Prevention & Education)
- "Life Support" cards for living with epilepsy
- Moran Eye Center (Fl-41 tinted glasses)
- NillyNoggin Cap for EEGs
- Parent 2 Parent
- Patient Centered Research
- RareCaregivers.org
- Shine Forward with Dravet
- The Charlie Foundation (Ketogenic diet)
New ICD-10 Codes for Dravet Syndrome
DSF has a downloadable handout with ICD-10 code information to give to HCP's and Therapists with the new codes.