This research into the humanitarian needs of people with epilepsy is a necessary extension to the current bulk of knowledge about epilepsy which is diagnostic, clinical and pharmacological. Its focus is on well-being, service use and economic burden this study is expected to give a good return on investment. To ensure an uptake of its findings, the study was developed with the national Epilepsy Action, Epilepsy Society of Australia as well as addressing questions deemed important by the World Health Organization, the International League against Epilepsy, and the International Bureau of Epilepsy. Findings will inform epilepsy guidelines, policy recommendations and programs to reduce the burden of illness.