You Are Not Alone: Resource Guide

National Organizations Dedicated to Addressing Epilepsy

Government Agencies

Centers for Disease Control and Prevention (CDC)
CDC, an agency of the U.S. Department of Health and Human Services, promotes health and quality of life by preventing and controlling disease, injury, and disability. The CDC Epilepsy Program conducts epilepsy program activities in improving care, improving communication and combating stigma, self-management, surveillance and prevention research, increasing public awareness and knowledge, and strengthening partnerships.  CDC Epilepsy Program

National Institute of Neurological Disorders and Stroke (NINDS)
NINDS is an agency of the U.S. Department of Health and Human Services and a component of the National Institutes of Health. It is the leading supporter of biomedical research on disorders of the brain and nervous system.   NINDS

Health Resources and Services Administration (HRSA)
HRSA is an agency of the U.S. Department of Health and Human Services. Its mission is to improve and expand access to quality health care for all, including people with epilepsy. HRSA

Non-Government Agencies

Epilepsy Foundation (EF)
EF is a national organization that provides education, advocacy, and other services for people living with epilepsy. The EF website offers detailed information on all aspects of epilepsy as well as on EF’s programs and services, news, and publications.

EF state affiliates provide services on the local level in many communities. Some EF affiliates have support groups specifically for parents. For a complete listing of state affiliates or to find the one closest to you, please contact EF.  Epilepsy Foundation

• Epilepsy Foundation Communities
  Epilepsy Foundation’s online community includes chatrooms and groups where people can talk to each other and share online, including parents of teens with epilepsy. EF Communities

American Epilepsy Society
This national society promotes research and education for professionals dedicated to the prevention, treatment, and cure of epilepsy. American Epilepsy Society.

National Association of Epilepsy Centers (NAEC)
The NAEC is a nonprofit trade association whose members include more than 200 specialized epilepsy centers across the United States. This association can help you find an epilepsy center close to your home. NAEC

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Teen Issues

Even though your teen has epilepsy, you’ll be faced with discussing “traditional” teen issues that arise for any parent of a teen. The following website resources may be of help to you.

Partnership for Drug-Free Kids
Includes a parent toolkit to help parents protect their kids and be proactive in their lives. Parents will also find information on drugs that are popular among teens and what they can do to guide their kids. Parents can connect with other parents through online chat, and with specialists through a helpine.

Advocates for Youth 
Collection of pamphlets, activities, multimedia reviews, and resource listings to answer parents’ questions about talking with adolescents about sexuality.

Palo Alto Medical Foundation Teen Health Series
Provides young people with medically accurate information and resources about their health, mental health, sex, and substance abuse.

Talking with Kids About Tough Issues 
Includes discussion tips on teen topics, including violence in the media, violence among friends and in relationships, and teen sexuality. Resources are provided and brochures can be downloaded. Sponsored by the Kaiser Family Foundation.

National Parenting Center 
Includes articles from experts on talking to teens about peer pressure, body image, sex, drug abuse, alcohol, and other topics.

Inside the Teenage Brain
Provides a wealth of information on teens and changes to expect through the adolescent period. Sponsored by Public Broadcasting Service.

National Institutes of Mental Health (NIMH) Children and Adolescents
Includes information on mental disorders such as depression, anxiety, learning disabilities, and eating disorders. Articles are related to children/teens and include definitions, warning signs, and information on how to talk to your kids about mental health issues and treatment options. Also includes summaries of clinical research conducted at NIMH, teen violence prevention, and other interesting teen issues.

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Family and Sibling Support Organizations

Parent to Parent
Local affiliates of parents and parental advocates. Each state offers something different to parents—some offer online services and others offer weekly columns. Parent to Parent

Families & Advocates Partnership for Education (FAPE)
FAPE works with the Epilepsy Foundation to inform families about the Individuals with Disabilities Education Act of 1997 (IDEA ’97) so that children with disabilities can reach their full potential. The site includes a listing of parent training and information centers and community groups in the United States. FAPE

Sibling Leadership Network
Provides individuals of siblings with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues to them and their entire family. Sibling Leadership Network

HEATH Resource Center 
Information about higher education and adult training for people with disabilities. HEATH Resource Center

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Additional Resources

American Academy of Child and Adolescent Psychiatry 
A series of informative fact sheets that include information on medications for children, health insurance, and how to seek help.  Facts for Families

University of Washington Adolescent Health Transition Project
A resource for teens and young adults with special healthcare needs, chronic illness, and physical or developmental disabilities.  

Disability.gov
U.S. Federal Government website for information on disability programs and services nationwide.

 

Health Information Databases

MedlinePlus
Includes extensive information from the National Institutes of Health and other trusted sources on more than 600 diseases and conditions. There are also lists of hospitals and physicians, a medical encyclopedia and dictionary, health information in Spanish, extensive information on prescription and nonprescription drugs, health information from the media, and links to thousands of clinical trials. MedlinePlus is updated daily and can be bookmarked.

Healthfinder.gov
An award-winning federal Web site developed by the U.S.Department of Health and Human Services together with other federal agencies. Since 1997, healthfinder has been recognized as a key resource for finding the best government and nonprofit health and human services information on the Internet. healthfinder links to carefully selected information and Web sites from more than 1,800 health-related organizations.

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