For Patients & Families

Tools and Resources

It’s crucial for patients and their families to stay informed about their health, treatment options, and community support networks. Below is a list of recommended organizations to help you navigate the various tools and resources available to meet your needs.


Child Neurology Foundation

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.

Infantile Spasms Action Network

The Infantile Spasms Action Network is a collaborative network of 32 national and international entities focused on raising awareness for infantile spasms.

Danny Did Foundation

The Danny Did Foundation works toward  advancing public awareness of Sudden Unexpected Death in Epilepsy (SUD), enhancing SUD education and disclosure, and mainstreaming of seizure detection and prediction devices.

LGS Foundation

The LGS Foundation is dedicated to improving the lives of individuals affected by Lennox-Gastaut Syndrome through raising funds for research, family support programs, community engagement, and education.

Dravet Syndrome Foundation

The Dravet Syndrome Foundation’s mission is to raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.

National Institutes of Health

The National Institute of Neurological Disorders and Stroke at the NIH is a resource for epilepsy treatments, clinical trials, publications, and ongoing research.

Epilepsy Foundation

The Epilepsy Foundation and its nationwide network of nearly 50 partners connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid.

Rare Epilepsy Network

The Rare Epilepsy Network (REN) is a volunteer network of rare epilepsy organizations and broad epilepsy stakeholders working to improve the lives of its individual constituents through research.