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Organizations: Epilepsy

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).

To get started, click one of the options below.


Not Sure Where to Start?

For featured resources, including our "top four" organizations as recommended by local experts in the field, see the Epilepsy Concern Topic Page.


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.
1-201-655-0420
akfus.org

Empowering Epilepsy
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.
View in Provider Directory

Epilepsy Association
Local nonprofit that assists children, families and adults in Northeast Ohio who are struggling to deal with the difficult challenges epilepsy can present.
View in Provider Directory

Epilepsy Foundation
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.
1-800-332-1000
contactus@efa.org
epilepsy.com

Epilepsy Free
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.
1-212-682-7929
epilepsyfree.com

The Charlie Foundation for Ketogenic Therapies
Provides information on diet therapies for people with epilepsy and other disorders.
1-310-393-2347
charliefoundation.org

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.
ice-epilepsy.org

Purple Day
Grassroots effort dedicated to increasing awareness about epilepsy worldwide by wearing purple annually on March 26th.
partners@purpleday.org
purpleday.org



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.
chelseaslegacy@aol.com
chelseahutchisonfoundation.org

Danny Did Foundation
National nonprofit with information on epilepsy and prevention of SUDEP.
1-800-278-6101
dannydid.org

SUDEP Aware
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.
1-855-85-SUDEP1
sudepaware.org



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.
1-626-225-2841
info@brainrecoveryproject.org
brainrecoveryproject.org

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.
hemifoundation.homestead.com



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.
1-800-374-8518
research@aicardisyndromefoundation.org
aicardisyndromefoundation.org

Dravet Syndrome Foundation
Nonprofit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood.
1-203-392-1950
info@dravetfoundation.org
dravetfoundation.org

Dup15q Alliance
Nonprofit organization that provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome.
855-387-1572
info@dup15q.org
dup15q.org

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.
info@hopeforhh.org
hopeforhh.org

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.
1-330-612-2751
cdkl5.com

The Lennox-Gastaut Foundation
Nonprofit with the mission of improving the lives of individuals affected by Lennox-Gastaut Syndrome through research, programs and education.
1-718-374-3800
info@lgsfoundation.org
lgsfoundation.org

PCDH19 Alliance
Nonprofit dedicated to improving the lives of children and families affected by PCDH19 epilepsy through funding research and providing information and support.
pcdh19info.org

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.
pmgawareness.org

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.
rechildrens.org

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.
ren.rti.org


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Westlake, Ohio 44145

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