Epilepsy Related Organizations

 

Alzheimer's Disease

http://www.alz.org
Alzheimer's Association: An informative site focusing on Alzheimer's research, services, and advocacy.

Angelman Syndrome

www.angelman.org
Angelman Syndrome Foundation, Inc.

Attention Deficit Disorder

http://www.add.org
Attention Deficit Disorder Association: This site provides information, resources and networking opportunities to help adults with Attention Deficit/Hyperactivity Disorder (AD/HD) lead better lives.

Autism

www.autism-society.org
Autism Society of America

www.autism-pdd.net
Autism-PDD Resources Network: Organization for parents of children with autism or the related PDD, pervasive developmental disorder. Includes state-by-state information and sample letters for dealing with school staff.

Brain Trauma

www.braintrauma.org
The Brain Trauma Foundation's goal is to improve the clinical treatment of traumatic brain injury patients. Their website provides treatment guidelines for healthcare providers and access to their quarterly newsletter.

Brain Tumor

www.abta.org/
American Brain Tumor Association: This site is an informative source about brain tumors, treatment options, clinical trials and living with a brain tumor. It also has a broad variety of social work resources and services listed

www.tbts.org/
The Brain Tumor Society's mission is to find a cure for brain tumors while improving the quality of life of patients and their families by providing access to psychosocial support, information and resources.

Cerebral Cavernous Malformations

www.angiomaalliance.org
Angioma Alliance is a non-profit international patient-driven organization serving those affected by cerebral cavernous malformations (also know as cavernous angiomas). Our mission is to inform and support individuals affected by cerebral cavernous malformations while facilitating improved diagnosis and management of the illness through education and research.

Cerebral Palsy

https://ucp.org
UCP (United Cerebral Palsy): Organization that works to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities. Site offers information on local as well as national services.

Fragile X

https://fragilex.org
The National Fragile X Foundation

Headache

www.achenet.org
The American Council for Headache Education(ACHE) is a nonprofit patient-health professional partnership dedicated to advancing the treatment and management of headache and to raising the public awareness of headache as a valid, biologically based illness.

www.headaches.org
The National Headache Foundation website provides resources,in-depth information and promotes awareness of headaches as a legitimate health problem.

www.headache-help.org
Help For Headaches is a London based non-profit organization and a registered Canadian charity that is committed to educational services for those suffering from and treating headaches. Their resource library boasts over 300 books, journals, and videos for people to access for research and to get answers.

www.kidshealth.org
An informative and kid friendly website which defines and explains headaches in age appropriate terms.

Learning Disabilities

https://ldaamerica.org/
Learning Disabilities Association of America

Mental Illness

www.nami.org
National Alliance for the Mentally Ill (NAMI): Support and advocacy organization working to improve the lives of people with severe mental illnesses (such as schizophrenia, major depression, bipolar disorder, obsessive-compulsive disorder, and anxiety disorders) and the lives of their families and friends.

Mental Retardation

www.thearc.org
The Arc of the United States: National organization of and for people with mental retardation and related developmental disabilities and their families.

www.jpkf.org
The Joseph P. Kennedy, Jr. Foundation: Services for those with mental retardation.

Mitochondrial Disease

www.umdf.org
United Mitochondrial Disease Foundation: A website promoting research for cures and treatments of mitochondrial disorders and support to affected individuals and families.

Neurofibromatosis

www.ctf.org
The Children's Tumor Foundation: Ending Neurofibromatosis Through Research (formerly known as the National Neurofibromatosis Foundation).

Stroke & Other Disorders

www.ninds.nih.gov
National Institute of Neurological Disorders and Stroke: A comprehensive source for neurological disorders including epilepsy and epilepsy-related disorders.

www.stroke.org
National Stroke Association

Sturge-Weber Syndrome

www.sturge-weber.org
The Sturge-Weber Foundation’s (The SWF) international mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions through collaborative education, advocacy, research and friendly support.

Tuberous Sclerosis

www.tsalliance.org
Tuberous Sclerosis Alliance: A voluntary organization dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected.

Williams Syndrome

www.williams-syndrome.org
Williams Syndrome Association

Resources

Epilepsy Centers

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Epilepsy Medication

Find in-depth information on anti-seizure medications so you know what to ask your doctor.

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Epilepsy and Seizures 24/7 Helpline

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Tools & Resources

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