Caregiver Resources
DSF helps to address the challenges of living with Dravet syndrome through a variety of resources and support options.
We want you to know you’re not alone. The mission of 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
- C.A.R.E. Binder for Adult Patients
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.