Together we can help improve the lives of people living with epilepsy!
Patient Advocacy Groups
We have included a short resource list of information about epilepsy, as well as research and patient groups related to the Human Epilepsy Project:
The Epilepsy Foundation’s Epilepsy.com is an internet resource by the Epilepsy Foundation to answer patients' questions about epilepsy, provide news and updates for epilepsy, and provide patients with ways to connect to a local support group and each other.
The Human Epilepsy Research Opportunities (HERO) site helps participants find research studies that they can participate in. Participants can search by age or state.
Citizens United for Research in Epilepsy (CURE) CURE's mission is to cure epilepsy, transforming and saving millions of lives. We identify and fund cutting-edge research, challenging scientists worldwide to collaborate and innovate in pursuit of this goal. Our commitment is unrelenting.
Finding a Cure for Epilepsy and Seizures (FACES) The mission of FACES is to improve the quality of life for all those affected by epilepsy and seizures. FACES is affiliated with NYU Langone Medical Center and its Comprehensive Epilepsy Center. FACES funds research to improve epilepsy care, advances new therapies, and fosters a supportive community for children, families and caregivers who live with the challenges of epilepsy.
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.
Patient-Centered Outcomes Research Institute PCORI's job is to close the gaps in evidence needed to improve key health outcomes. To do this, we identify critical research questions, fund patient-centered comparative clinical effectiveness research, or CER, and disseminate the results in ways that the end-users of our work will find useful and valuable.
Research Projects and Registries
Many new epilepsy studies and registries are active; some of the research projects highlighted below are projects by scientific groups who are scientists on HEP; others are projects that are related to familial epilepsies like those studied by the HEP Project.
The Epilepsy Genetics Initiative (EGI) is a collaboration by the Citizens United for Research in Epilepsy (CURE), National Institute of Neurological Disorders and Stroke (NINDS), and Vogelstein Foundation to advance precision medicine in epilepsy. EGI has created a centralized database to hold the genetic data of people with epilepsy. The data (called exome data) will be analyzed and reanalyzed in an attempt to identify the cause of the person’s epilepsy. If you are having genetic testing done, you can have your exome data contributed and studied at EGI. More information can be found here. Contact the research team at Columbia for more information: (844) EGI-CURE or egi@CUREepilepsy.org
Ann Poduri, MD at the Epilepsy Genetics Program at Boston Children’s Hospital is a doctor at Boston Children's Hospital who studies epilepsy genetic disorders, particularly in infantile spasms, Ohtahara Syndrome, Dravet Syndrome, and malformations of cortical development. Contact the program for more information: (617) 355-8656.