Helpful Resources On Epilepsy

According to the Center for Disease control, epilepsy, a neurological disorder characterized by recurring seizures, currently affects around two million Americans. Living with any disability is not easy, but fortunately, resources that provide aid to those living with disabilities are plentiful. So whether you personally suffer from epilepsy, know someone who does, or are simply curious about learning more, below are some helpful resources.

Epilepsy Support and Information Epilepsy Treatment and Research Prescription Assistance Programs Employment Disability Support Sites

Epilepsy Support and Information

  • Center for Disease Control – Epilepsy:  The Center for Disease Control, run by the United States government, provides a wealth of resources on epilepsy. In addition to providing current information, statistics, and answers to frequently asked questions, the website also offers links to key publications about epilepsy – everything from management of the disease to its association with depression and anxiety. Lists of training for nurses, parents, students, and more are also listed on the website.
  • Epilepsy.com: Members of Epilepsy.com gain instant access to an online community that supports and empowers people suffering from epilepsy. There is a discussion forum dedicated to answering people’s everyday questions surrounding the disease and its treatment; there is also a “My Epilepsy Diary” program available. The website runs the Epilepsy Therapy Project, which seeks to find the most effective therapies for treatment.
  • Epilepsy Foundation: The Epilepsy Foundation is a national organization dedicated to serving the 3 million Americans who suffer from epilepsy. The website has detailed information about the science of epilepsy and resources on living with the disease; they offer various magazines and publications aimed at women, the elderly, teens, and parents. In addition, the organization is involved in advocacy, trying to advance healthcare through politics, and research.
  • National Institute of Neurological Disorders and Stroke: The National Institute of Neurological Disorders and Stroke (NINDS) is an organization dedicated to “reducing the burden of neurological disease.”  Being diagnosed with a neurological disorder like epilepsy is frightening, so the organization provides detailed information on the causes, diagnosis, treatments, current research, and information on living with the disease.
  • U.S. National Library of Medicine – Epilepsy: The United States Library of Medicine provides the most current information on epilepsy. The website has information on the most current news in the scientific community and diagnosing the disease. There is also a “reference shelf,” which lists organizations, glossaries, and statistics.

Epilepsy Treatment and Research

  • American Epilepsy Society  The American Epilepsy Society (AES) is one of the oldest epilepsy societies in the United States. It seeks to encourage interdisciplinary exchange of research in order to find better treatments and cures for the disease. Members are usually medical professionals interested in promoting or participating in research; each year the society hosts an annual meeting featuring lectures, exhibitions, and symposia.
  • Center for Disease Control and Prevention – Epilepsy Research: The Center for Disease Control and Prevention publishes all of their research project publications online. Epidemiologic and population studies, healthcare, quality of life, and surveillance studies are just a few of the categories their research projects fall into. Most research projects offer downloadable abstracts online.
  • The Charlie Foundation: The Charlie Foundation, established in 1994, was founded in honor of Charlie Abrahams, a twenty-month-old child who was cured of his epilepsy after beginning to follow a ketogenic diet. Awareness of the diet treatment is limited, so the website provides information, recipes, and training seminars in order to educate the public about the diet therapy option. In addition, the foundation lists links to hospitals and clinics around the country that offer the ketogenic diet.
  • CURE Epilepsy: CURE (Citizens United for Research in Epilepsy) is a non-profit organization whose goal is to find a cure for the disease through fundraisers for epilepsy research and raising public awareness. Since 1998, the organization has raised more than $10 million dollars for research and continues its advocacy efforts in the political sector in order to increase federal expenditures. The website also provides information on the current research efforts, upcoming events, and ways to get involved.
  • Global Campaign for Epilepsy Research: Out of the Shadowsis a program founded by the World Health Organization that aims to increase awareness of epilepsy and improve treatment. Atlas: Epilepsy Care in the World in 2005 is available online; the book details healthcare, employment benefits, and addresses stigma and social issues.

Prescription Assistance Programs

  • FamilyWize: FamilyWize is a discount drug prescription card that typically offers a 15 to 20 percent discount on prescription medications. The card can offer discounts for those who have no health insurance or need medicine that is not covered by health insurance. There are no eligibility requirements or registration required.
  • Medicare.gov: Medicare is the United States government healthcare system available to the elderly and the disabled. The website has tools to assess eligibility, details the health and drug plans, and lists accredited healthcare facilities and doctors.
  • National Association of Boards of Pharmacy: This association is extremely useful for finding cheaper medications online. The website lists accredited discount online pharmacies to make online shopping easier.
  • Partnership for Prescription Assistance: Partnership for Prescription Assistance is a non-profit organization that aids patients who have no medical coverage receive their medications for free or at a discounted rate.  Their Their organization partners with more than 475 public and private programs, with over 200 of those being pharmacies.
  • RXAssist: RxAssist is a prescription assistance program, run by pharmaceutical companies, that aims to provide free medication to those who cannot afford to pay.  Patients, if eligible for the program, can search for prescriptions online and have them delivered in as early as two days.

Employment (Facts, Anti-Discrimination Policies, Support, etc.)

  • Job Accommodation Network: The Job Accommodation Network’s Accommodation and Compliance Series is a program that aims to help employers provide employment accommodations for their employees with epilepsy under compliance with the Americans With Disabilities Act. The document describes the nature of epilepsy and then describes possible changes an employer can make to help their employees suffering from epilepsy.
  • US Deparment of Labor – Small Business and Self-Employment Resources:  The US Department of Labor provides resources for running a small business while handling a disability.  The website gives a general background, challenges in self-employment, and benefits of pursuing self-employment.
  • United States Department of Labor – Office of Disability Employment: The Office of Disability Employment Policy offers statistics and resources on employment opportunities for those with disabilities in the United States. The website also lists links to articles and announcements about the current employment benefits available.
  • US Equal Employment Opportunity: The United States Equal Employment Opportunity guarantee recently released a new publication that addresses the rights of employees affected by epilepsy. The publication is available on their website, www.eeoc.gov, and deals with various issues such as when epilepsy is considered a disability and how employers should deal with safety concerns.
  • US Office of Personnel Management: The US Office of Personnel Management has a wealth of information on understanding Federal hiring programs.  The website also has information on discrimination laws and resources for employment opportunities.

Disability Support Sites

  • disABILITY:disABILITY is a website run by James Lubin.  The website lists a multitude of resources directed at people living with disabilities; these include links to adaptive needs special clothing, job training, independent living, and educational literature. 
  • Disability.gov: Disability.gov is a government-run website that aims to connect those with disabilities to resources and opportunities. The website can aid in finding employment, learning about disability laws and rights, find housing, apply for scholarships and much more. The website also lists support groups and information by state.
  • Family Village: Family Village is a “global community of disability related resources.”  The organization provides information on a variety of topics including communication connections, disability-related literature, and adaptive products and technology.