The first few websites link to the organizations related to Epi4K: NINDS, Coriell, and EPGP.
NIH’s National Institute of Neurological Disorders and Stroke (NINDS)
The National Institute of Neurological Disorders and Stroke (NINDS) conducts and supports research on brain and nervous system disorders. Created by the U.S. Congress in 1950, NINDS is one of the more than two dozen research institutes and centers that comprise the National Institutes of Health (NIH). The NIH, located in Bethesda, Maryland, is an agency of the Public Health Service within the U.S. Department of Health and Human Services. NINDS has occupied a central position in the world of neuroscience for 50 years.
NINDS/Coriell Cell Line Repository
The NINDS Human Genetics Resource Center at the Coriell Institute is a growing bank for human cells, DNA samples, clinical data, and information sources, to accelerate research on genetics of disorders of the nervous system.
Epilepsy Phenome/Genome Project
A collaboration of more than 150 researchers and 5,500 research participants from around the world, the members of the Epilepsy Phenome/Genome Project (EPGP) are working together to build a database of interview, EEG, MRI, and clinical data-and the corresponding DNA from each participant-that will contribute approximately 4,000 DNA specimens to Epi4K.
Patient Information Websites
The websites below have information of particular help and interest to research participants and patients with epilepsy.
The Epilepsy Foundation is the national voluntary agency solely dedicated to the welfare of the 3 million 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; and to prevent, control and cure epilepsy through research, education, advocacy and services. In addition to programs conducted at the national level, epilepsy clients throughout the United States are served by local Epilepsy Foundation offices in nearly 100 communities.
Epilepsy.com is an online resource provided by the Epilepsy Therapy Development Project. Their mission is to inform and empower two groups of patients and their families: those facing newly diagnosed epilepsy, and those struggling with epilepsy that has resisted treatment.
Finding A Cure for Epilepsy and Seizures (FACES) is a non-profit organization affiliated with the NYU Comprehensive Epilepsy Center. Founded in 1996 by Orrin Devinsky, M.D., Director of the NYU Comprehensive Epilepsy Center, FACES’ mission is to improve the quality of life for all people affected by epilepsy through research, education and awareness, and community-building events.
Citizens United for Research in Epilepsy (CURE)
Citizens United for Research in Epilepsy, is a volunteer-based nonprofit organization founded by parents of children with epilepsy who were frustrated with their inability to protect their children from the devastation of seizures and the side effects of medications. Unwilling to sit back and accept the debilitating effects of epilepsy, these parents joined forces to spearhead the search for a cure. Administrative costs are kept to a minimum, so that money raised can go directly towards finding a cure.