RESOURCES
The resources below offer additional information about Dravet syndrome as well as support for patients, caregivers, and families.
Downloadable resources
You may want to provide these informative tools to your patients’ caregivers and families.
The Impact of Caring
This infographic for caregivers of your patients provides powerful at-a-glance facts about the toll that caring for a loved one with Dravet syndrome takes on caregivers and entire families.
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Growing Up With a Sibling With Severe Epilepsy:
YOU ARE NOT ALONE
This resource for caregivers of patients who have a brother or sister with severe epilepsy reports results from the Sibling Voices Study and recommends specific, practical steps siblings can take for support and understanding.
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Dravet Syndrome Website for Caregivers
Dravet Syndrome Caregiver Website www.ShineForwardWithDravet.com This website offers helpful resources, including advice from other parents and caregivers on managing life with Dravet syndrome, fun activities the whole family can do together, and information on supporting siblings of children with Dravet syndrome.
Organizations
Many organizations provide condition-related educational information, support, and useful tools for the community. The third-party resources listed below are for the reader’s information only. Zogenix does not endorse and is not responsible for the content included in these resources.
Dravet Syndrome Foundation www.dravetfoundation.org The mission of Dravet Syndrome Foundation is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; to increase awareness; and to provide support to affected individuals and families.
American Epilepsy Society www.aesnet.org The American Epilepsy Society (AES) brings together the full spectrum of professionals dedicated to advancing more effective epilepsy care, from scientists and patient advocates through healthcare providers. Its mission is to advance research and education for professionals dedicated to the prevention, treatment, and cure of epilepsy. Visit the AES website for patient/caregiver education, a “Find a Doctor” database, information about the latest scientific developments, and more.
Citizens United for Research in Epilepsy (CURE) www.cureepilepsy.org The mission of CURE is to find a cure for epilepsy by promoting and funding patient-focused research.
Danny Did Foundation www.dannydid.org Founded by parents whose son Danny died from sudden unexpected death in epilepsy (SUDEP) at age 4, the mission of the Danny Did Foundation is to advance public awareness of epilepsy and the risk of SUDEP, increase access to alerting devices, and ultimately, to prevent deaths caused by seizures.
MORE About Dravet Syndrome
and Genetic Testing
Some organizations provide specific educational information about Dravet syndrome on their website. The third-party resources listed below are for the reader’s information only. Zogenix does not endorse and is not responsible for the content included in these resources.
Genetic and Rare Diseases (GARD) Information Center www.rarediseases.info.nih.gov
Invitae Corporation’s “Behind the Seizure” Program www.invitae.com/en/behindtheseizure
National Organization for Rare Disorders www.rarediseases.org
MORE About SUDEP
A number of organizations provide educational information about SUDEP. The third-party resources listed below are for the reader’s information only. Zogenix does not endorse and is not responsible for the content included in these resources.
Centers for Disease Control and Prevention (CDC) www.cdc.gov/epilepsy/about/sudep/index.htm www.cdc.gov/epilepsy/about/sudep/parents.htm
Danny Did Foundation www.dannydid.org
Epilepsy Foundation www.epilepsy.com/learn/early-death-and-sudep/sudep
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