We are thrilled to see Congress recognize the importance of investing in the epilepsies in the House Fiscal Year 2025 Labor Health & Human Services Education Appropriations legislation that passed the committee this week. This is a positive step forward for the epilepsies community, unlocking opportunities for research, policy advancements and funding.
Together with our partners, we have been working hard to educate policymakers on the impact of the epilepsies, and the specific need for resources for translational pediatric research and for national surveillance efforts. This year’s language builds upon last year’s efforts to establish a Pediatric Onset Epilepsies Network and to have a national surveillance system to accurately track the burden and incidence of the epilepsies. We will continue to advocate for these priorities as the Senate drafts their bill and throughout the rest of the FY25 budget process. Together with government, we can improve outcomes for people living with epilepsy, their families and their communities.
Below is the wording that was included:
Pediatric-Onset Epilepsies Network.—The Committee encourages NIH to establish a pediatric-onset epilepsies network. Such a network could help coordinate research of pediatric-onset epilepsies across institutions to maximize the potential for scientific progress in the era of precision medicine. This network could create a collaborative, multidisciplinary research model to enroll patients from many hospitals in the same system to enable cooperative research studies, accelerate the development of knowledge about the epilepsies, and rapidly advance therapeutic options and their implementation to improve treatments and healthcare outcomes.
Epilepsy.—The Committee commends CDC for its ongoing leadership of this successful program and effective community collaborations, and encourages further efforts to eliminate stigma, improve awareness and education, and better connect people with epilepsy to health and community services. The Committee recognizes the importance of data to accurately understand the incidence, prevalence, and mortality rate of epilepsies, along with individual and social risk factors that influence health outcomes. The Committee appreciates CDC’s ongoing epilepsy-related surveillance and funding of epidemiologic studies on epilepsy. The Committee encourages CDC to enhance surveillance and epidemiologic studies of epilepsies to generate data that can guide interventions to improve outcomes for people with epilepsy.
Thank you, Congress!
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