Community Resources for People with Epilepsy
Reviewed by: HU Medical Review Board | Last reviewed: November 2021 | Last updated: May 2022
Living with a chronic condition like epilepsy can be hard on your emotions and finances. This is especially true if you cannot work or drive. People with epilepsy may limit their social connections, by choice or necessity. This is especially true if someone faces frequent hospital stays. The emotional strain may lead to depression and anxiety.
Having friends who understand exactly what you are going through can ease the journey. A community may also give you the physical and emotional support you need to stay as healthy as possible. This support may be found through friends, family, hobbies, nonprofits, and online communities like the one here at EpilepsyDisease.com.
Some other resources are listed below.
The Epilepsy Foundation
The Epilepsy Foundation is this condition’s leading nonprofit in the United States. Its many programs include:1
- Local chapters around the country
- A national helpline staffed 24/7
- Funding for epilepsy research
- Resources for families to develop seizure action plans and seizure trackers
- Training in seizure first aid
- Educational materials for schools and public advocacy
- Database of epilepsy specialists and epilepsy centers.
The Epilepsy Foundation also sponsors the annual Walk to End Epilepsy fundraiser.
American Epilepsy Society
The American Epilepsy Society (AES) is a nonprofit for professionals who work in the field of epilepsy. The group holds an annual meeting to discuss the latest research and funds epilepsy research. Its medical journal Epilepsy Currents requires a subscription. However, your doctor may be able to look up articles and print them for you.2
The AES partners with the Epilepsy Foundation to provide a database of U.S. epilepsy doctors and accredited care centers.
The Anita Kaufmann Foundation
The Anita Kaufmann Foundation educates the public about epilepsy and brain trauma. It offers free educational materials, seizure first aid training, and help with social support, work, transportation, and more.3
The foundation also partners with the U.S. Department of Veterans Affairs on the Heads Up For Vets program.
The U.S. Department of Veterans Affairs runs epilepsy centers around the country. It also partners with the Epilepsy Foundation and Anita Kaufmann Foundation to support military personnel and veterans with epilepsy. It offers a video series for people who served and now have epilepsy due to brain trauma.4
Rare Epilepsy Network
The Rare Epilepsy Network joins the forces of 30+ rare epilepsy organizations. This volunteer group maintains a rare epilepsy registry. The registry follows about 1,500 people with rare forms of epilepsy. The group focuses on improving the lives of people with rare epilepsies through research and advocacy.5
National Association of Epilepsy Centers
The National Association of Epilepsy Centers (NAEC) sets standards for epilepsy centers in the United States. It also provides patient education about epilepsy and epilepsy centers.6
Other helpful epilepsy resources
There are many specialized epilepsy resources out there, including:1-7
- North American AED Pregnancy Registry provides information on which anti-seizure drugs are safe to take while pregnant or breastfeeding.
- U.S. Centers for Disease Control and Prevention (CDC) provides epilepsy education.
- CURE Epilepsy is a nonprofit that funds epilepsy research that will lead to a cure.
- FACES (Finding a Cure for Epilepsy and Seizures) offers patient and caregiver resources. It is sponsored by NYU Langone Health’s epilepsy center.
- Human Epilepsy Project looks for answers to new-onset and treatment-resistant epilepsy.
- MyEpilepsyStory.org offers support for women and girls living with epilepsy, as well as children impacted by their mother’s epilepsy.
- North American SUDEP Registry documents and analyzes cases of sudden unexpected death in epilepsy (SUDEP). Its goal is to learn what may lead to SUDEP and what may prevent it.
- Know SUDEP Now is a partnership of the Epilepsy Foundation and Cameron Boyce Foundation. It raises awareness of SUDEP.
Epilepsy advocacy events
Purple is the official color used to support epilepsy causes. There are many official days that work to raise awareness and funds for epilepsy, including:1-7
- National Epilepsy Awareness Month – November
- Purple Day Every Day – March 26
- International Epilepsy Day – February 14
- #WalktoEndEpilepsy sponsored by the Epilepsy Foundation