The following list of resources is designed to support individuals and families navigating the challenges of rare epilepsies. Whether you're looking for more general information, caregiver support, financial assistance, or tools for managing transitions, these resources offer valuable insights and practical solutions. With contributions from leading organizations and advocacy groups, the following guide aims to empower patients, caregivers, advocates, clinicians, and researchers to find the support they need
Epilepsy-Specific Resources
-
Developmental & Epileptic Encephalopathy (DEE) Toolkit: Epilepsy Foundation
-
Resource Hub: Dee-P
-
Contact The Epilepsy Foundation's 24/7 Hotline: 1-800-332-1000 (English), 1-866-748-8008 (Spanish)​
Genetic Testing & Counseling
-
Genetic Testing for the Epilepsies: Rare Epilepsy Network
-
Gene-Based Dx 101: By Global Genes
-
Newborn Screen Action Center: EveryLife Foundation
Caregiver & Family Resources
-
Caregiver Connect: Dravet Syndrome Foundation
-
Parents, Caregivers & Sibling Kits: DEE-P Connections
-
Care & Family Resources: DEE-P Connections
-
Care Coordination Resources: Childhood Neurology Foundation
Transitions & Support
-
Caring for Adults with Rare Epilepsy Binder: For Dravet, TSC, and LGS (developed with UCB).
-
Transition to Adulthood: Pediatric Epilepsy Surgery Alliance.
-
Transitions of Care HUB: Childhood Neurology Foundation.
-
Shortening the Diagnostic Odyssey: Childhood Neurology Foundation.
-
Growing Together: Navigating the Life Stage Checklist for Families Webinar: Pediatric Epilepsy Surgery Alliance, DEE-P, Angelman Syndrome Foundation & REN
Preventing SUDEP & Mortality
-
Preventing Epilepsy Deaths: Clinician Toolkit: By CNF, EF, AES, Danny Did, and others.
-
Time to Talk About Seizures and Rescue Therapies: By The Seizure Action Plan Coalition (managed by Epilepsy Alliance America), Living Well with Epilepsy, and DEE-P Connections.
Financial Assistance
-
Financial Resources Toolkit: Dup15q Alliance.
-
Financial Support: EveryLife Foundation
-
NORD's State Resource Center: A list of local, state, and national organizations offering free or low-cost services (disability assistance, caregiver support, legal advocacy, and more).
Insurance & Legal Advocacy
-
State by State Insurance Guide 2022: Angelman Syndrome Foundation.
Finding a Clinical Trial
-
How to Find a Clinical Trial: National Library of Medicine
Advocacy & Drug Development
-
Rare Disease Drug Development: What Patients and Advocates Need to Know (NORD with FDA’s Center for Drug Evaluation and Research (CDER) and Critical Path Institute (C-Path)).
-
ICD Code Roadmap Resource Guide: EveryLife Foundation.
-
Building a More Inclusive Rare Disease Community: Global Genes.
-
The Rise of the Impatient Advocate: Global Genes.
Global & Intersectoral Efforts
-
Intersectoral Global Action Plan (IGAP): Visit ILAE Gateway to stay updated.