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 (CNF) 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. CNF also has a Digital Access Program providing grants to families.
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.
CVI: Cerebral / Cortical Visual Impairment
Cerebral / Cortical Visual Impairment (CVI) is caused by damage or interruption to the brain’s visual pathways or visual processing areas. CVI is based in the brain rather than the eyes, but affects how visual information is processed and interpreted. 64% of kids with CVI have epilepsy.
You can find out more at the CVINOW.org website, including:
CVI by the numbers – Perkins School for the Blind
What is CVI?
How is CVI diagnosed?
CVI Now Parents | Facebook
1:1 CVI Parent Support
CVI Now IEP Guide – Perkins School for the Blind
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
Josh Provides is a member organization of Epilepsy Alliance America
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
Our friends at CURE EPILEPSY have created a resource for understanding the prescription medicine supply chain and how it impacts your access to medication.
Below are some links to independent organizations that have programs to help access prescriptions for patients.
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.
Epilepsy Alliance America does not have an official podcast.
There are many podcasts our there for the epilepsy community.
Preventing Epilepsy Deaths
Epilepsy is a neurological disease that doubles or triples the risk of a person dying prematurely. Important causes of death among people with epilepsy include injuries, status epilepticus, and SUDEP, some of which may be preventable with access to high-quality specialty health care and compliance with effective treatment plans. In 2022, the Child Neurology Foundation convened a group of people with lived experience and experts in the epilepsy community from the US, Canada, and the UK to collaboratively create this toolkit, which over 50 people and 18 epilepsy organizations have endorsed. The goal of the behavior change toolkit is to educate clinicians on how to talk with families and people living with epilepsy about addressing epilepsy mortality risk factors.
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.
The Pediatric Epilepsy Surgery Alliance, previously known as The Brain Recovery Project, is an alliance of families, clinicians, educators and researchers moving mountains for children who need neurosurgery to treat their 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
Epilepsy Alliance America is the managing organization of the Seizure Action Plan Coalition. 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.
Living Well with Epilepsy was founded in 2019 and provides epilepsy information, including news, style, fitness, entertainment, healthcare updates and personal stories. In March 2023 they launched a Free Epilepsy Guide available at their website.
The NCOA created Resources and Support for Older Adults Living Alone, a guide which includes practical tips and resource recommendations from geriatric health experts and advocates, such as: PACE programs, which use Medicare and Medicaid to help older adults attain nursing home-level care; HealthFinder, a resource with easy-to-understand articles, videos, and interactive tools to help older adults make informed decisions about their health; and, NCOA’s BenefitsCheckUp tool which helps older adults identify their potential eligibility for benefits and programs
HHS has published an emergency planning toolkit for children and adolescents with special health care needs. It is intended for providers and their partners who serve this population, and their families/caregivers.
The goal of this educational initiative is to enable, empower, and prepare people with epilepsy (young adults and adults), their families/caregivers, and healthcare providers to have productive and meaningful conversations about responding to seizures and using rescue therapies.
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.
The International Bureau for Epilepsy held a special 3 hour webinar about the unique issues of Women and Epilepsy in 2023. You can access the recording here.
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 email@example.com.
Updated February 14, 2024