In addition to the resources and tools of Epilepsy Alliance America’s member organizations, the following organizations provide additional information for people with epilepsy
General Information about Epilepsy
The CDC website has tremendous amount of information about epilepsy and resources for people with epilepsy on its website, available in both English and Spanish.
The CDC Epilepsy Program shared a final report regarding the 2012 IOM Report in September 2022 which you can find here.
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. Included on their website is an Epilepsy Education Hub. Child Neurology Foundation also have information about Sudden Unexpected Death in Epilepsy.
National Institute of Neurological Disorders and Stroke
NIH has many resources available about Epilepsy available on its site, including a 48 page brochure entitled The Epilepsies and Seizures: Hope Through Research.
The mission of CURE EPILEPSY is to find a cure for epilepsy, by promoting and funding patient-focused research.
Financial Support for People with Epilepsy
The mission of JoshProvides is to improve the quality of life for those living with epilepsy or other seizure disorders. In addition, Josh Provides strives to eliminate the stigma and social isolation associated with epilepsy. Josh Provides offers direct financial assistance in the following areas:
- Medical Services – JoshProvides offers assistance with the cost of a neurology appointment or seizure-related treatment that is recommended by the patient’s medical doctor and not covered by private medical insurance, other reimbursement plans, or government-funded programs.
- Seizure Alert & Detection Devices – There are over 40 different types of seizures. Seizure alert & detection devices can assist in detecting when a tonic-clonic (grand mal) seizure is occurring and will issue an alert to parents, friends, or caregivers. Consult your neurologist and research available devices.
- Seizure Response Dog – Seizure response dogs can be wonderful service dogs for people living with epilepsy.
- Transportation & Travel – Adults experiencing seizures are prohibited from driving until they are six-months seizure free. This limitation can directly impact an individual’s ability to go to work, attend school, or get to medical appointments. JoshProvides offers assistance with transportation through bus passes, access to paratransit services, LYFT and UBER gift cards. Transportation assistance will also be considered for medical treatment/diagnosis.
Medication Cost Assistance
NeedyMeds.org is a private nonprofit web site that provides information about government programs, low-cost or free medical and dental clinics, and prescription assistance programs. They also list programs that may help people who cannot afford medicines and healthcare costs. You can also find some disease-specific financial aid programs.
NeedyMeds.org lets you search for patient assistance programs by drug name. For each drug on the list, NeedyMeds.org gives the program name, phone number, application link, eligibility guidelines, application requirements, and program details.
This web-based tool is provided by members of the Pharmaceutical Research and Manufacturerers of America (PhRMA). This search engine helps patients search up patient assistance programs.
This is a free resource designed for patients who are struggling to afford their prescription medications. This resource helps connect these patients with patient assistance programs.
This is a resource center that provides the following information: patient assistance programs, Medicare Part D programs for low-cost medicines, etc.
Psychogenic Non-Epileptic Seizures (PNES)
This website is administered by a group of specialists in PNES who work together to build public awareness and a reservoir of information for health professionals.
Learn about Epilepsy Alliance America’s Lorna Myers Scholarship Program here.
Sudden Unexpected Death in Epilepsy (SUDEP)
The mission of the Danny Did Foundation is to advance public awareness of epilepsy and the risk of Sudden Unexpected Death in Epilepsy (SUDEP), to protected people with epilepsy and to prevent deaths caused by seizures.
People with epilepsy may use service animals as part of their care plan. Michigan State University’s resource is a table that compares the state service animal laws in all 50 states. The table compares several categories, including public accoomodation laws, criminal interference laws, licensing laws, disabled pedestrian laws, and service animal mispresentation laws. Links to the text of the various laws are provided.
Epilepsy centers provide a comprehensive team approach to the diagnosis and treatment of epilepsy. A patient-oriented team will typically include epileptologists (neurologists with expertise in treating seizures), neurosurgeons, neuropsychologists, nurse specialists, EEG technologists, social workers, and others with training and experience in epilepsy care. Specialized epilepsy centers provide routine care to individuals with seizures or epilepsy, and specialize in providing comprehensive diagnostic and treatment services to individuals with uncontrolled seizures (i.e., intractable or refractory epilepsy).
The Managing Epilepsy Well (MEW) Network is a multi-site initiative, funded by the CDC Epilepsy Program, aimed at improving the health and well-being of people with epilepsy, by advancing epilepsy self-management research, evaluation and program dissemination.
To learn more about the Epilepsy Alliance America member organizations that have MEW Programs, click here.
National Institute of Neurological Disorders and Stroke
Resource for patients who are underinsured, uninsured, or want a second opinion.
Epilepsy Program – Phone: 301-435-2952, Email: Epilepsy@nih.gov
Tools you can Use
This collaborative effort is designed to raise awareness of what a Seizure Action Plan (SAP) is; the importance of a SAP in the health management of those with epilepsy; and resources to develop an individualized SAP. While our three organizations have done the initial work to get this project off the ground, we have done so with the plan to expand it out to all of our fellow advocacy organizations who work in the epilepsy space.
For Veterans with Epilepsy
The mission of the Epilepsy Centers for Excellence is to to improve the health and well-being of Veteran patients with epilepsy and other seizure disorders through the integration of clinical care, research and education
For Women with Epilepsy
The world of sexual development, menstruation, contraception, fertility and pregnancy is complex, but when you have epilepsy, there are extra issues you need to know about. Being a woman with epilepsy is definitely not the same as being a man with epilepsy. This website is here to help, with extensive information for every woman with epilepsy of child-bearing age, whether she wants to get pregnant or not.
This list is not meant to be comprehensive of all of the Resources available for people with epilepsy. If you have a suggestion for a resource that should be included here, please email us at firstname.lastname@example.org.
Updated September 29, 2022