American Epilepsy Society
A community engaged in the diagnosis, study, prevention, treatment and cure of Epilepsy, with the goal of improving outcomes for people impacted.
A community engaged in the diagnosis, study, prevention, treatment and cure of Epilepsy, with the goal of improving outcomes for people impacted.
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.
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.
Promotes and funds patient-focused research in pursuit of a cure for epilepsy.
Supports and funds research, increases awareness and provides support to affected individuals and families through assistance grants, educational conferences and clinical trials.
Provides programs, services and advocacy for individuals and their families living with epilepsy. Library of educational resources and more; new materials added often.
Parent support group, children’s expressive art group and other resources.
The National Center for Project Access offers helpful information to families with a newly diagnosed child.
Parent and clinician organization that improves the lives of individuals affected by Lennox-Gastaut Syndrome through research, family support programs and education.
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.
Provides support for families to find helpful resources, including diet therapy, videos of SLC6A1 characteristics and other information.
Website dedicated to understanding that Epilepsy is a naturally occurring disability. Resources for coping, medication and support are discussed.
Information about diet therapies for people with Epilepsy and other neurological disorders, including hospitals that specialize in ketogenic therapies and recipes.
Online tool to help guide individuals and families through the complexities of TSC across the lifespan, proactively manage care and live full lives.