The group SUDEP Aware promotes understanding and knowledge about SUDEP in Canada and the United States (sudepaware.org ). Epilepsy Bereaved in the U.K. (sudep.org ) provides support services to affected families and dedicates its research funds to the prevention of SUDEP and other epilepsy-related deaths. Epilepsy Bereaved convened the first international research workshop on SUDEP in 1996, which helped define SUDEP and identified research priorities.
In 2008, Epilepsy Bereaved established the SUDEP Research Initiative, a collaboration with a team of researchers at King's College, University of London, and King's College Hospital National Health Service Foundation Trust. Topics identified for research include the communication of risk, impact of SUDEP, monitoring of epilepsy-related deaths, and seizures that occur during sleep. Ongoing studies include research into death after epilepsy surgery, as well as an assessment of SUDEP in patients with refractory epilepsy and vagus nerve stimulation.
Other SUDEP resources include:
▸ CURE (Citizens United for Research in Epilepsy): cureepilepsy.org
▸ Epilepsy Foundation: efa.org
▸ Epilepsy Therapy Project: epilepsy.com