This list identifies local and national organizations that provide resources and support for epilepsy in general as well as diagnosis-specific organizations (for example, Dravet Syndrome, epilepsy surgery and more).
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The following organizations address epilepsy at the general level:
The Anita Kaufmann Foundation
National organization focused on educating the public about epilepsy and helping eliminate the fear and stigma associated with epilepsy and brain trauma.
Local nonprofit dedicated to creating a proactive, seizure controlling/preventative respite center and community for people with epilepsy, their families and caregivers in Northeast Ohio.
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Local nonprofit that assists children, families and adults in Northeast Ohio who are struggling to deal with the difficult challenges epilepsy can present.
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National nonprofit, working to prevent, control, and cure epilepsy through community services; public education; federal and local advocacy; and supporting research into new treatments and therapies.
Nonprofit, working to support people with epilepsy and seizure disorders (including psychogenic non-epileptic seizures) achieve a life with freedom from the limitations that epilepsy and seizures might bring.
The Charlie Foundation for Ketogenic Therapies
Provides information on diet therapies for people with epilepsy and other disorders.
The Intractable Childhood Epilepsy Alliance
Nonprofit, committed to facilitating the understanding of the root cause of the epilepsies and avenues to better treatment and ultimately a cure.
Grassroots effort dedicated to increasing awareness about epilepsy worldwide by wearing purple annually on March 26th.
The following organizations provide support and information for Sudden Unexpected Death in Epilepsy (SUDEP):
Chelsea Hutchinson Foundation
Nonprofit with the mission of raising awareness of SUDEP and using it to grant comfort, hope and positivity to individuals and families living with epilepsy. The foundaiton also provides grants to assist with the cost of seizure response dogs and electronic monitors.
Danny Did Foundation
National nonprofit with information on epilepsy and prevention of SUDEP.
Canadian charity dedicated to raising awareness and understanding of Sudden Unexpected Death in Epilepsy (SUDEP), with the ultimate goal of finding its cause(s) and prevention.
The following organizations provide support and information for families who have gone through or are considering surgery for epilepsy:
The Brain Recovery Project
Nonprofit organization dedicated to funding research to better understand functional outcomes after hemispherectomy, improve those outcomes, and to provide resources to children affected by these procedures.
The Hemispherectomy Foundation
Nonprofit organization that provides emotional, financial, and educational support to individuals and their families who have undergone (or will undergo) a hemispherectomy or similar brain surgery.
The following organizations provide support and information for rare forms of epilepsy:
Aicardi Syndrome Foundation
Nonprofit organization dedicated to raising research funds and awareness for Aicardi syndrome.
Dravet Syndrome Foundation
Nonprofit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood.
Nonprofit organization that provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome.
Hope for Hypothalamic Hamartomas (Hope for HH)
Nonprofit organization with the mission of creating a single, credible source for information about the diagnosis, treatment, and support of individuals with HH.
International Foundation for CDKL5 Research
Local nonprofit organization dedicated to finding a cure and treatments for CDKL5 disorder by providing a variety of information, programs, and services.
The Lennox-Gastaut Foundation
Nonprofit with the mission of improving the lives of individuals affected by Lennox-Gastaut Syndrome through research, programs and education.
Nonprofit dedicated to improving the lives of children and families affected by PCDH19 epilepsy through funding research and providing information and support.
PMG (Polymicrogyria) Awareness
Nonprofit dedicated to building a community of support to enhance the lives of those affected by Polymicrogyria, through education, advocacy and promoting awareness.
The Rasmussen's Encephalitis (RE) Children's Project
Nonprofit organization dedicated to supporting research toward finding a cure for RE as well as supporting the recovery process following hemisphrectomy surgery.
The Rare Epilepsy Network
Collaboration between the Epilepsy Foundation, RTI International and Columbia University, dedicated to creating a registry of these patients which includes patient or caregiver-reported data in order to conduct patient-centered research.