As the national medical and scientific society for epilepsy professionals, and a chapter of the International League Against Epilepsy (ILAE) under the ILAE North America, the American Epilepsy Society was instrumental in securing critical United States support for the World Health Organization (WHO) Intersectoral Global Action Plan for Epilepsy and Other Neurological Disorders (IGAP).
The first goal of IGAP is that 75% of all countries worldwide will have a national strategy/plan to address neurological disorders. The United States has national plans for many neurological disorders (including Alzheimer’s, Parkinson’s, ALS, MS, and Autism) but not for Epilepsy.
AES supports creation of a national plan through a comprehensive, transparent, community-wide consensus process incorporating input from the broadest group of stakeholders, including the medical, scientific, public health, and policy communities and people with epilepsy and their caregivers. The Epilepsies Action Network (EAN) has taken initial steps to promote the need for a national plan for epilepsy, including generation of grassroots support from the advocacy community, work on drafting of legislative language to secure Congressional approval of a national epilepsy project, and has played an important role in growing the Congressional Epilepsy Caucus.
To further this effort, AES is creating a Steering Committee made up of representatives of national provider and patient epilepsy organizations to develop the programmatic elements of the national plan along with the legislative concepts for authorizing legislation. AES has initially invited the following representation to the Steering Committee: AES, CURE Epilepsy, EAN, Epilepsy Foundation (EF), Epilepsy Leadership Council (ELC), ILAE North America, and the National Association of Epilepsy Centers (NAEC). The Steering Committee will serve as a conduit for facilitating a process to secure full community input and support for the legislative effort and for the substantive goals of the plan.