American Epilepsy Society
A community of professionals engaged in the understanding, diagnosis, study, prevention, treatment and cure, with the goal of improving outcomes for people with epilepsy.
Angelman Syndrome Clinic
Serves Angelman syndrome patients from birth through young adulthood at Rady Children’s Hospital, providing care for medical, developmental and behavioral needs. Includes a clinical geneticist, neurologist, orthopedic surgeon, developmental psychologist, behavior analyst, gastroenterologist, dietitian and speech therapist.
3020 Children's Way
SD, 92123
858-576-1700
www.rchsd.org/programs-services/neurology/services/angelman-syndrome-clinic
SD, 92123
858-576-1700
www.rchsd.org/programs-services/neurology/services/angelman-syndrome-clinic
Child Neurology Foundation
Connects partners from the child neurology community so people navigating disease diagnosis, management and care have ongoing support from those dedicated to treatments and cures.
CURE Epilepsy
Promotes and funds patient-focused research worldwide in pursuit of a cure for epilepsy.
Dravet Syndrome Foundation
Supports and funds research, increases awareness and provides support to affected individuals and families through assistance grants, educational conferences and clinical trials.
Epilepsy Alliance of America
Provides programs, services and advocacy for individuals and their families living with epilepsy. Library of educational resources and more; new materials added often.
Epilepsy Foundation of San Diego
Parent support group, children’s expressive art group and other resources.
Epilepsy Toolkit for Newly Diagnosed Children and Youth
The National Center for Project Access offers helpful information to families with a newly diagnosed child.
Lennox-Gastaut Syndrome (LGS) Foundation
Parent and clinician organization that improves the lives of individuals affected by Lennox-Gastaut Syndrome through research, family support programs and education.
National Organization for Rare Disorders (NORD)
We elevate care, advance research, and drive policy in a holistic manner to lift up the rare disease community and help with access to medication, diagnostics, caregiver support and other needs.
SLC6A1 Connect
Provides support for families to find helpful resources, including diet therapy, videos of SLC6A1 characteristics and other information.
Talk About It!
Website dedicated to understanding that Epilepsy is a naturally occurring disability. Resources for coping, medication information and support are discussed in a matter-of-fact manner.
The Charlie Foundation for Ketogenic Therapies
Information about diet therapies for people with epilepsy and other neurological disorders, including a database of hospitals that specialize in ketogenic therapies and recipes.
Tuberous Sclerosis Complex Alliance
Online tool to help guide individuals and families through the complexities of TSC across the lifespan, proactively manage care and live full lives.