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.
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.
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.
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.
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.
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.
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.