Resources
The organizations listed here offer reliable information, peer support, financial assistance, and advocacy for children and families living with epilepsy. This is not an exhaustive list, but it is a good starting point.
General Epilepsy Information & Support
Epilepsy Foundation
The Epilepsy Foundation is the largest national organization serving people with epilepsy and their families in the United States. Their website covers seizure types, medications, treatment options, and day-to-day living. They also offer a 24/7 helpline (1-800-332-1000, available in English and Spanish), a medication guide, a seizure diary app, local chapters with support groups and summer camps, and patient assistance resources to help with medication costs and insurance.
Empowering Epilepsy
Empowering Epilepsy is a nonprofit focused on peer support across all age groups. Their most distinctive offering is a set of online support groups organized by life stage, with separate groups for kids, teens, young adults, parents, adults, and seniors. Their approach is community-driven rather than clinical, which many families find valuable alongside more information-focused resources.
Epilepsy Surgery
Pediatric Epilepsy Surgery Alliance
The Pediatric Epilepsy Surgery Alliance (PESA) is the only caregiver-led organization in the United States focused specifically on children who may need, or have already had, brain surgery for epilepsy. They offer one-on-one guidance from trained parent volunteers (available in multiple languages), travel scholarships of up to $1,000 for families traveling to a Level 4 epilepsy center, monthly virtual Q&A sessions, and free school training resources. If your child has been referred for a surgical evaluation, PESA is an invaluable resource.
Research & Rare Epilepsies
CURE Epilepsy
CURE Epilepsy is the leading nonprofit dedicated to funding epilepsy research, with a focus on treatment-resistant epilepsy, SUDEP, infantile spasms, and rare genetic epilepsies. For families, they offer accessible educational content on research developments, webinars, and information on clinical trials.
Rare Epilepsy Network (REN)
The Rare Epilepsy Network is a consortium of over 150 member organizations working to improve outcomes for patients with rare epilepsy diagnoses through research and advocacy. For families, it serves as a hub to find syndrome-specific organizations, connect with community, and learn about research opportunities. If your child has a rare genetic epilepsy and you are not sure where to start, the REN member directory is a useful first step.
LGS Foundation
The LGS Foundation supports families affected by Lennox-Gastaut syndrome through research funding, family support programs, and advocacy. They offer a patient assistance program, a family ambassador network of caregivers with lived LGS experience, and an active online community of over 7,000 members across 27 countries.
TSC Alliance
The TSC Alliance is the leading organization for tuberous sclerosis complex, a genetic condition that causes benign tumors in multiple organs and is one of the most common single-gene causes of epilepsy. They fund research, maintain a clinic locator, and offer support resources for families across the lifespan, including guides covering TSC from infancy through adulthood.
Dravet Syndrome Foundation
The Dravet Syndrome Foundation (DSF) is the largest non-governmental funder of Dravet syndrome research worldwide, founded by parents in 2009. Beyond research grants, DSF offers family support resources, educational webinars, a patient assistance grant program, and an international ion channel patient registry. Their weekly blog and email updates are a practical way to stay current on treatment developments.
International Rett Syndrome Foundation (IRSF)
The IRSF is the leading research, family support, and advocacy organization for Rett syndrome, a genetic neurological disorder caused by MECP2 mutations that primarily affects girls and typically presents with developmental regression in the second year of life. They fund research, maintain a network of designated Centers of Excellence, and provide a comprehensive family resource library.
International Foundation for CDKL5 Research (IFCR)
The IFCR is the primary organization for families affected by CDKL5 Deficiency Disorder, a rare genetic epileptic encephalopathy causing early-onset seizures and neurodevelopmental delay. They fund research, maintain a network of CDKL5 Centers of Excellence across the United States, and offer a community platform to link families with researchers and clinical trials. Their newly diagnosed guide is a good starting point for families who have just received this diagnosis.
Angelman Syndrome Foundation
The Angelman Syndrome Foundation supports families affected by Angelman syndrome, a genetic neurodevelopmental disorder caused by loss of UBE3A function and characterized by seizures, developmental delay, and a generally happy, sociable demeanor. They offer family support resources, a clinic directory, and educational programs, while the Foundation for Angelman Syndrome Therapeutics (cureangelman.org) focuses specifically on research toward a cure.
SCN8A Alliance
The SCN8A Alliance is the leading advocacy and research organization for SCN8A-related disorders, a spectrum of conditions ranging from severe early-onset epileptic encephalopathy to milder phenotypes. They maintain the International SCN8A Registry, produced the first-ever consensus guidelines on SCN8A diagnosis and treatment, and connect families with clinicians and researchers worldwide.
KCNQ2 Cure Alliance
The KCNQ2 Cure Alliance supports families affected by KCNQ2-related epilepsy, which typically presents in the newborn period and ranges from self-limited neonatal seizures to severe developmental and epileptic encephalopathy. Their website provides detailed information on the spectrum of KCNQ2 disorders, guidance on treatment, and connections to the research and clinical community.
KCNT1 Epilepsy Foundation
The KCNT1 Epilepsy Foundation supports families affected by KCNT1-related disorders, a group of rare genetic epilepsies caused by variants in the KCNT1 potassium channel gene. They provide family resources and connections to clinical expertise, and are actively building the research infrastructure needed to support the first targeted therapies for this condition.
Finding an Epilepsy Center
National Association of Epilepsy Centers (NAEC)
The NAEC accredits epilepsy centers across the United States and maintains a searchable directory of certified programs. Centers are classified as Level 3 or Level 4, with Level 4 centers offering the full range of diagnostic and surgical services for the most complex cases. If your child has drug-resistant seizures or is being considered for surgery, the NAEC directory is a good way to find an accredited center near you.
For Clinicians and Curious Families
ILAE Epilepsy Diagnosis
This website is the International League Against Epilepsy’s online diagnostic manual, providing detailed information on seizure types, epilepsy syndromes, EEG features, video examples, and underlying etiologies. It is primarily designed for clinicians, but curious families and older patients who want to understand the classification framework behind their diagnosis will find it a thorough and authoritative reference.
Understanding Genetics
ncbi.nlm.nih.gov/books/NBK115563
Published by Genetic Alliance and freely available through the U.S. National Library of Medicine, Understanding Genetics is a patient-oriented guide covering the fundamentals of how genes and chromosomes work, the different types of genetic disease, inheritance patterns, genetic counseling, and the emotional and practical implications of a genetic diagnosis. It does not focus specifically on epilepsy, but families who want a deeper grounding in genetics concepts after reading the genetic testing chapter will find it a clear and thorough companion.
A Note on Online Information
The internet contains a great deal of information about epilepsy, and not all of it is accurate or up to date. When searching for information about your child’s diagnosis or medications, the organizations listed above are reliable starting points. For medical questions specific to your child’s care, your neurology team is always the best resource.