Patient organizations aim to improve quality of life for individuals and their families who are affected by certain health conditions. Their objectives include raising public awareness of a disorder, dissemination of information about the disease and its treatment, and promotion of scientific research. Click on the links below to learn more about patient organizations across America who are involved in epilepsy research, treatment, and support.
The Antiepileptic Drug Pregnancy Registry
125 Nashua St, Suite 8488. Boston, MA 02114. (888) 233-2334.
The Antiepileptic Drug Pregnancy Registry’s major objective is to obtain and publish information on the frequency of major malformations, such as heart defects, spina bifida and cleft lip, among infants whose mothers had taken one or more AEDs to prevent seizures or to treat any other medical condition. The North American AED (Antiepileptic Drug) Pregnancy Registry is the first hospital-based registry established to determine the safety of seizure medications that can be taken by women during pregnancy.
Caregiver Action Network
1150 Connecticut Ave N.W., Suite 501. Washington, DC 20036. (202) 454-3970.
Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN (the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
CDC – Epilepsy
1600 Clifton Road, Atlanta, GA 30329. (800) 232-4636.
The U.S. Centers for Disease Control and Prevention (CDC) provides information for patients, parents, care givers, health care providers, schools and communities.
Child Neurology Foundation
201 Chicago Ave, Suite 200. Minneapolis, MN 55415. (612) 928-63255.
The Child Neurology Foundation connects partners from all areas of the child neurology community so those navigating the journey of disease diagnosis, management, and care have the ongoing support from those dedicated to treatments and cures. The Child Neurology Foundation’s expanding network of patients and caregivers, volunteers and advocates, researchers and clinicians is committed to helping one another along the path that leads to the best quality of care — and the highest quality of life—for every child.
Citizens United for Research in Epilepsy (CURE)
223 W. Erie, Suite 2 S.W. Chicago, IL 60654. (312) 255-1801; (800) 231-2873.
The Citizens United for Research in Epilepsy’s mission is to find a cure for epilepsy, by promoting and funding patient-focused research. CURE Epilepsy awards grants for novel research projects to prevent epilepsy related to pediatric epilepsy, post-traumatic epilepsy, treatment-resistant epilepsies, and Sudden Unexplained Death in Epilepsy (SUDEP), eliminating treatment side effects, and reversing deficits caused by frequent seizures.
Dravet Syndrome Foundation
P.O. Box 3026, Cherry Hill, NJ 08034. (203) 392-1955.
The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.
8301 Professional Place W., Suite 230. Landover, MD 20785. (301) 459-2700; (800)-332-1000.
The Epilepsy Foundation is increasing awareness and changing the conversation around epilepsy, improving and saving lives through care, advocacy, research and new therapies, education, and mobilizing everyone to take action. The Foundation and its nationwide network of nearly 50 partners connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid.
Family Caregiver Alliance/National Center on Caregiving
101 Montgomery St, Suite 2150. San Francisco, CA 94004. (415) 434-3388; (800) 445-8106.
The mission of Family Caregiver Alliance (FCA) is to improve the quality of life for family caregivers and the people who receive their care. For over 40 years, FCA has provided services to family caregivers of adults with physical and cognitive impairments such as Parkinson’s, stroke, Alzheimer’s and other types of dementia. FCA’s services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers. Ongoing support is available with FCA, also now on a digital service platform.
Hope for Hypothalamic Hamartomas (Hope for HH)
P.O. Box 721, Waddell, AZ 85355.
Hope for Hypothalamic Hamartomas (Hope for HH) is a volunteer-based nonprofit organization founded by parents of children with hypothalamic hamartomas (HH). Hope for HH’s goal is to create a single, credible source for information about the diagnosis, treatment, and support of individuals with HH.
Lennox-Gastaut Foundation (LGS Foundation)
80 Orville Dr, Suite 100. Bohemia, NY 11716. (718) 374-3800.
The LGS Foundation is a non-profit organization dedicated to providing information about Lennox-Gastaut Syndrome while raising funds for research, services and support for individuals living with LGS and their families. The LGS Foundation is based in New York and provides services and information to thousands of community members across the world.
The National Organization for Rare Disorders (NORD)
55 Kenosia Ave, Danbury, CT 06810. (203) 744-0100; (800) 999-6673.
The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
NIH – Epilepsy
9000 Rockville Pike Bethesda, Maryland 20892, Phone: 301-496-4000
Rasmussen’s Encephalitis Children’s Project, LLC (RE Children’s Project)
79 Christie Hill Rd, Darien, CT 06820. (917) 971-2977.
RE Children’s Project, LLC is a non-profit voluntary organization dedicated to increasing awareness of Rasmussen’s encephalitis (RE) while supporting scientific research directed towards a cure. RE Children’s also supports research towards the recovery process following hemispherectomy surgery, a life altering, radical brain surgery that is the only known “cure” for the disease. Rasmussen’s encephalitis is a rare disorder of the central nervous system characterized by chronic inflammation (encephalitis) of one hemisphere of the brain.