NOW OPEN FOR COMMUNITY ENDORSEMENT:
EPILEPSY COMMUNITY CONSENSUS PRIORITIES WITH GOALS FOR THE NATIONAL PLAN FOR EPILEPSY
Over the past year, dozens of members of the epilepsy community and representatives from epilepsy organizations contributed to a process spearheaded by the National Plan for Epilepsy Committee (NPEC) to draft recommendations with bold goals and targeted actions for policymakers and epilepsy organizations to prevent, diagnose, treat, and cure epilepsy, including rare and genetic epilepsies, across the life span and etiologies.
The “Epilepsy Community Consensus Priorities” seek to:
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End the stigma towards epilepsy
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Improve the learning environment and educational opportunities and increase the employment of people living with epilepsy
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Reduce burden and improve quality of life for people living with epilepsy and their caregivers, including by addressing the impact of seizures and comorbidities
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The priorities reflect contributions from several dozen members of the epilepsy community and we thank everyone for their input!
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The Consensus Priorities are now available for endorsement by national, state, and local organizations--both within and outside of the epilepsy community. Please review and complete the brief form if your organization would like to sign on to endorse the priorities.
Signing onto the document means that your organization:
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Endorses the broad goals, priorities, and actionable strategies contained in the National Plan for Epilepsy Committee's Epilepsy Community Consensus Priorities
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Recognizes that these priorities build on groundwork and progress to date and reflect the input and expertise of a wide and diverse community invested in improving the lives of people affected by epilepsy
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Recognizes that follow-on work to coordinate activity to achieve these goals, identify foles, decipher which will be sought through government action, develop implementation plans and timelines, and track progress is a subsequent phase that is important to achieve the priorities
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Commits to exploring and supporting the next phase as is possible but for now, endorses the priorities themselves
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We will list endorsing organizations on the NPEC website and refer to the list in all publications. Our goal is to show that the Consensus Priorities truly do have support from the broad epilepsy community and that the community is united in working together to achieve them.
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Endorsing Organizations
as of March 27, 2026
NPEC Steering Committee Organizations
American Epilepsy Society
CURE Epilepsy
Epilepsies Action Network
Epilepsy Alliance America
Epilepsy Foundation of America
Epilepsy Leadership Council
International League Against Epilepsy-North America
National Association of Epilepsy Centers
Rare Epilepsy Network
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Additional Endorsing Organizations
American Academy of Developmental Medicine & Dentistry (AADMD)
CACNA1A Foundation
Child Neurology Foundation
CSNK2A1 Foundation
CureSHANK
Danny Did Foundation
Dravet Syndrome Foundation
Epilepsy Alliance Florida
Epilepsy Alliance Louisiana
Epilepsy Association of Western and Central PA
GLUT1 Deficiency Foundation
Hope for HIE
Hope for ULD
International Foundation for CDKL5 Research
JoshProvides Epilepsy Assistance Foundation
KCNQ2 Cure Alliance
PAME
Paul’s Purple Warriors
Purple Peace 4 Epilepsy
Ring 20 USA
Ring14 USA INC
South Carolina Advocates for Epilepsy
The Charlie Foundation for Ketogenic Therapies
The Sturge-Weber Foundation
TSC Alliance
What the Ef?! Podcast
Young Adults with Epilepsy
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