Collaboration is part of Epilepsy Alliance America’s DNA.
In addition to the collaborative working relationships with our member organizations, Epilepsy Alliance America actively participates in coalitions and networks that are advancing programs, services and advocacy efforts for the epilepsy community. We are proud to be part of the following networks and coalitions.
Seizure Action Plan Coalition
Epilepsy Alliance America became the managing organizatin of the Seizure Action Plan Coalition (SAPC) in 2023. The SAPC began in 2020 as a labor of love between the LGS Foundation, Dravet Syndrome Foundation, and TSC Alliance. The organizations knew there was an opportunity to bring the epilepsy community together to bring attention and awareness to Seizure Action Plans for people with epilepsy. Seizure Action Plan Awareness Week is held in February each year.
American Brain Coalition
The American Brain Coalition (ABC) is a collaborative network uniting patients, caregivers, researchers, and healthcare professionals to advance brain health. Through advocacy, education, and research initiatives, ABC strives to improve the lives of those affected by brain disorders. Epilepsy Alliance America joined the American Brain Coalition in 2022.
Child Neurology Foundation: Neurology Social Services Network
The Neurology Social Services Network (NSSN) was launched by CNF in 2022 to help patient advocacy organizations refer families to local service organizations to address social determinants of health. Some examples of services for families include access to food shelves, transportation assistance, and housing assistance. The program also tracks the outcomes of those referrals, measures the impact of organizational programs, and collaboratively aggregates data about how patient advocacy organizations are making an impact. Epilepsy Alliance America joined the network in 2023.
Epilepsies Action Network
Epilepsies Action Network (EAN) brings together parents, siblings, caregivers, and advocates in partnership with doctors, nurses, researchers, and policy makers to raise awareness and increase funding for The Epilepsies to improve the lives of all persons living with this disease. Epilepsy Alliance America joined EAN in 2023.
Epilepsy Leadership Council
The Epilepsy Leadership Council (ELC), managed by AES, is made up of individuals representing organizations serving individuals with epilepsy and their families, as well as professionals, and governmental organizations. The mission is to develop and coordinate among its members shared projects that will have a positive impact on the lives of individuals with epilepsy, focusing on those areas where working together produces greater efficiency and impact than working independently. Epilepsy Alliance America joined the Epilepsy Leadership Council in 2021.
Infantile Spasms Awareness Network
The Infantile Spasms Awareness Network (ISAN) is a dedicated community bringing together families, caregivers, patient advocacy groups and medical experts to support those affected by infantile spasms. Infantile Spasm Awareness Week is recognized annually the first week of December. Epilepsy Alliance America joined the Infantile Spasms Awareness Network in 2021.
International Bureau for Epilepsy
The International Bureau for Epilepsy (IBE) aims to improve the social condition and quality of life of people with epilepsy and those who care for them. The IBE is made up of laypersons and professionals interested in the medical and non-medical aspects of epilepsy. They address social problems such as education, employment, insurance, driving licence restrictions and public awareness. Epilepsy Alliance America joined IBE as a chapter in 2021.
Rare Epilepsy Network
The Rare Epilepsy Network (REN) is a collaborative network uniting patients, caregivers, patient advocacy organizations and professionals to advance research and care for rare epilepsy. It connects individuals, facilitates information exchange, and fosters research collaboration. REN raises awareness, advocates for funding, and promotes policies to improve access to care. Epilepsy Alliance America joined the Rare Epilepsy Network in 2024.