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NIH Neurological Institute The National Institute of Neurological Disorders and Stroke, a component of the National Institutes of Health, is the leading Federal supporter of research on disorders of the brain and nervous system. The Institute also sponsors an active public information program with staff who can answer questions about diagnosis and research related to seizures and epilepsy. Private voluntary organizations that provide information on treatment, diagnosis, and services include the following: American Epilepsy Society The American Epilepsy Society, one of the oldest
neurological professional organizations in the country, promotes research and education
for professionals interested in seizure disorders and epilepsy. Membership consists of
clinicians, scientists investigating basic and clinical cfmects of epilepsy, and other
professionals interested in both pediatric and adult seizure disorders. The Society
develops resources and collaborative relationships worldwide to advance patient care and
to support efforts leading to the prevention, treatment, and cure of epilepsy. It also
holds an annual scientific meeting that attracts more than 3,500 professionals. Citizens United for Research in Epilepsy (CURE) CURE is a global grassroots organization dedicated to finding a cure for pediatric intractable epilepsy. CURE works to stimulate innovative epilepsy research through private funding sources and by publishing the long overlooked need for a cure for this disease. Epilepsy Foundation The Epilepsy Foundation is a national voluntary health agency that works for people affected by seizures through research, education, advocacy, and service. Its goals are the prevention and cure of seizure disorders, the alleviation of their effects, and the promotion of independence and optimal quality of life for people who have these disorders. Epilepsy Foundation affiliates serve people with epilepsy and their families in more than 100 communities throughout the United States. National Association of Epilepsy Centers The goals of this Association, which includes the majority of specialized epilepsy centers in the U.S., are to provide information about the care of patients with epilepsy to the appropriate government and industry officials; to exchange information among its members; and to participate in developing standards for programs providing services. National Organization for Rare Disorders (NORD)| The National Organization for Rare Disorders (NORD), a federation of voluntary health organizations dedicated to helping people with rare "orphan"diseases, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. For information on prescription medicines, contact: National Council on Patient Information and Education The National Council on Patient Information and Education is a coalition of organizations committed to providing patients, consumers, and caregivers with useful and appropriate medicine information. Pregnant women with epilepsy can help researchers learn how epilepsy drugs affect unborn children by participating in the following program: Antiepileptic Drug Pregnancy Registry Other support organizations include:
Family Caregiver Alliance Services offered by the Family Caregiver Alliance include specialized information and assistance, consultation on long-term care planning, service linkage and arrangement, legal and financial consultation, respite services, counseling, and education. National Family Caregivers Association Through its services in the areas of education and information, support and validation, public awareness, and advocacy, the National Family Caregivers Association strives to improve caregivers’ quality of life. Source: National Institute of Neurological Disorders and Stroke |
