Epilepsy Organizations

Federal Resources 

National Institute of Neurological Disorders and Stroke (NINDS)
The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease. To support the mission, NINDS performs neuroscience research, conducts research training, and promotes the timely dissemination of scientific discoveries.

Centers for Disease Control and Prevention (CDC)
As the nation’s health protection agency, CDC saves lives and protects people from health threats. To accomplish the mission, CDC conducts critical science and provides health information that protects our nation against expensive and dangerous health threats, and responds when these arise.

Learn some basics about epilepsy: A Cup of Health with CDC

Professional epilepsy societies 

American Epilepsy Society
The American Epilepsy Society seeks to promote interdisciplinary communications, scientific investigation and exchange of clinical information about epilepsy. Membership consists of clinicians, scientists investigating basic and clinical aspects of epilepsy, and other professionals interested in seizure disorders. Members represent both pediatric and adult aspects of epilepsy.

National Association of Epilepsy Center (NAEC)
NAEC is a non-profit association with a membership of more than 200 specialized epilepsy centers in the United States. NAEC educates public and private policymakers and regulators about appropriate patient care standards, reimbursement and medical services policies.

Citizens United for Research in Epilepsy (CURE)
CURE is a nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease.

Epilepsy Society
Epilepsy Society is the UK’s leading provider of epilepsy services. Through cutting edge research, awareness campaigns, information resources and expert care, Epilepsy Society works for everyone affected by epilepsy in the UK.

Childhood Epilepsy Foundations

Intractable Childhood Epilepsy Alliance (ICE)
The ICE is committed to facilitating the understanding of the root cause of the epilepsies and avenues to better treatment and ultimately a cure.

Young Epilepsy
The mission of Young Epilepsy is to enable children and young people with epilepsy and associated conditions to develop their full potential through removing stigma and discrimination, being at the forefront of research into epilepsy, providing expert information and training, influencing policy and thought, and delivering unique integrated health, education and care services to support students.

The Infantile Spasms Community
The Infantile Spasms Community is an online forum.

Dravet Syndrome Foundation
Dravet Syndrome Foundation is a volunteer-based, non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions.

LGS Foundation
The LGS Foundation is non-profit organization dedicated to providing information about Lennox-Gastaut Syndrome (LGS) while raising funds to pursue research, services and programs for patients living with LGS and their families.

Tuberous Sclerosis Alliance
The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected.

RE Children’s Project
The RE Children's Project is to increase awareness regarding Rasmussen's Encephalitis (RE) for the primary purpose of supporting scientific research directed towards a cure.

Hope for Hypothalamic Hamartomas (Hope for HH)
Hope for HH is a volunteer-based, nonprofit organization founded by parents of children with hypothalamic hamartomas (HH). The goal is to create a single, credible source for information about the diagnosis, treatment, and support of individuals with HH.

Sudden Unexpected Death in Epilepsy (SUDEP) Foundations

SUDEP Aware
SUDEP Aware is a Canadian charity dedicated to raising awareness and understanding of SUDEP, with the ultimate goal of finding its cause(s) and prevention.

SUDEP Action
SUDEP Action focuses on providing information on SUDEP, offering support when someone has died, involving people to help effect change, sponsoring research, and capturing data across the UK.

Danny Did
The Danny Did Foundation works toward its mission to prevent deaths caused by seizures with these main goals in mind: advancing public awareness of SUDEP, enhancing the SUDEP communication model between medical professionals and families afflicted by seizures, and the mainstreaming of seizure detection and prediction devices that may assist in preventing seizure-related deaths.

Family Support

Epilepsy Foundation
The Epilepsy Foundation of America is the national voluntary agency dedicated solely to the welfare of people with epilepsy in the U.S. and their families. The organization works to ensure that people with seizures are able to participate in all life experiences, to improve how people with epilepsy are perceived, accepted and valued in society, and to promote research for a cure.

Caregiver Action Network (CAN)
CAN is the nation’s leading family caregiver organization working to improve the quality of life for the than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN provides education, peer support, and resources to family caregivers across the country free of charge.

Family Caregiver Alliance (FCA)
FCA is the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home. FCA provides caregivers the assistance they need and deserve, and champion their cause through education, services, research and advocacy.

Federation For Children With Special Needs
The Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities.

Parents Helping Parents (PHP)
Parents Helping Parents (PHP) is a parent-directed non-profit resource center offering educational programs, health related services, and support networks for children and adults with special needs. PHP empowers families to become effective advocates and helps both children and adults with special needs reach their full potential and find their valuable place in society.

Epilepsy Life Links
Epilepsy Life Links provides a comprehensive array of supports and life-improvement opportunities for people of all ages diagnosed with epilepsy and seizure disorders. The programs focus on the physical and mental well-being of persons with epilepsy by promoting education, accessibility to health care, peer communication, and a sense of community.

Epilepsy Research and Clinical Trials

NIH Clinical Center
National Institutes of Health (NIH) Clinical Center

NINDS Clinical Trials
National Institute of Neurological Disorders and Stroke (NINDS) Clinical Trials

AED Pregnancy Registry
North American Antiepileptic Drug (AED) Pregnancy Registry

HERO
Human Epilepsy Research Opportunities (HERO)

Other Sites of Potential Interest

The Charlie Foundation for Ketogenic Therapies
The Charlie Foundation for Ketogenic Therapies was founded in 1994 to provide information about diet therapies for people with epilepsy, other neurological disorders and tumorous cancers.

National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

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Guide to disability insurance
Guidebook on how to manage school (K-12 and college) with a chronic health condition

Please note: Cain Labs, NRI, Texas Children's Hospital or Baylor College of Medicine and their employees are not responsible for the accuracy of the clinical/financial or any other information in the above-mentioned third-party websites.