Numerous online resources are available topeople with epilepsyand the people who care about them. In addition to websites, many of these organizations are present on Facebook, Twitter, or other social media platforms.
Here is a sampling of epilepsy resources.
The Epilepsy Foundation
Based in Landover, Maryland, the Epilepsy Foundation provides education, promotes research, and advocates for the rights of people with epilepsy. Their website has helpful information about:
- Types of epilepsy and treatment options
- Epilepsy syndromes
- What it's like to live with epilepsy
- Self-care and first aid for people with epilepsy
- Current research studies and other news
The Epilepsy Foundation has a presence onmultiple social media platforms. Their toll-free number (800-332-1000) operates as a public hotline 24 hours a day, seven days a week. You can also email them for more information atContactUs@efa.org.
The American Epilepsy Society
The American Epilepsy Society (AES), headquartered in Chicago, was founded in 1898 with the goal of advancing scientific understanding of epilepsy and improving the quality of life of people with epilepsy.
The group holds an annual meeting of epileptologists (medical professionals specializing in epilepsy). It also raises money to fund research, develops treatment guidelines, works to increase awareness of the disorder, and helps guide public policy.
In addition to having extensive resources for epilepsy professionals, the website also includes resources for patients.
The AES site has links to multiple other epilepsy organizations. 312-883-3800,info@aesnet.org.
国际抗癫痫联盟
Founded in 1909, the ILAE is an international organization with more than 100 national chapters. It offers guidance and sets international standards for diagnosis and care of epilepsy.
联合公民研究癫痫(治疗)
CURE focuses on raising money to fund research leading to a cure for epilepsy.
This Chicago-based group also works to increase awareness of the disorder. Its website offers educational epilepsy information, a list of ongoing clinical trials, and a list of fund-raising events that it sponsors. 312-255-1801,info@CUREepilepsy.org.
U.S. Centers for Disease Control and Prevention: Epilepsy
This page has multiple resources about epilepsy, seizure first aid, and emergency preparedness.
Information about epilepsy is also available in Spanish.
Self-management tools and program resources are available through their Managing Epilepsy Well (MEW) program.
National Association of Epilepsy Centers
A guide to more than 230 comprehensive epilepsy centers with a search function for finding one near you.
The National Institute of Neurological Disorders and Stroke (NINDS) Epilepsy Clinic
The Epilepsy Clinic at the NINDS, located in Bethesda, Maryland, provides inpatient and outpatienttreatment of epilepsywith a focus on individuals with poorly controlled seizures. Contact information is provided for people with epilepsy interested in treatment or in participating in research.
SUDEP Action
This UK-based group works to raise awareness of sudden unexpected death in epilepsy (SUDEP) and other epilepsy-related deaths.
MyEpilepsyTeam.com
A social networking site specifically for people with epilepsy.
CarpeDB
CarpeDB is a dynamic epilepsy genetics database sponsored by the National Science Foundation and the University of Alabama in Tuscaloosa. CarpeDB serves as a novel source for both epilepsy researchers and the public by featuring scores of "epilepsy genes" and associated publications in one location.
Their site has links to multiple other international organizations.
